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Nearly 1 in 10 Americans lives with a rare disease

2/28/2013

(BPT) - Did you know that the same number of people die each year from idiopathic pulmonary fibrosis, or IPF, as breast cancer? And yet IPF, a rare and debilitating disease that causes permanent scarring of the lungs, is still relatively unknown.

Fortunately, the focus on rare diseases like IPF is growing because they’re more common than we think: when combined, they affect nearly 30 million, or about one in 10 Americans.

The National Institutes of Health says there are nearly 7,000 such conditions and many are difficult to diagnose. As we celebrate the 30th anniversary of the Orphan Drug Act, a federal law to encourage the development of new treatments for rare diseases, progress has been made, but patients with most rare diseases are still without an FDA-approved treatment.

One such rare disease is IPF. This debilitating and often fatal lung disease which gets worse over time, causes lung tissue to scar and thicken. Breathing is difficult for IPF patients, which can make everyday tasks, like walking up stairs or doing errands, a challenge.

Like many rare diseases, IPF is difficult to diagnose particularly because the cause of the disease is unknown.

For this reason, organizations like the Pulmonary Fibrosis Foundation, American Thoracic Society and Boehringer Ingelheim Pharmaceuticals are working to raise awareness of this deadly disease. Observances like Rare Disease Day, an international advocacy day aimed to raise awareness of rare diseases, are opportunities to further this mission and recognize the challenges faced by patients.

“This is a milestone year for rare disease awareness and we are excited to see continued progress for patients with IPF,” says Dolly Kervitsky, of the Pulmonary Fibrosis Foundation. “We are encouraged by the accomplishments of the research community, as we continue our efforts to spread awareness about the disease through forums like Rare Disease Day.”

The Pulmonary Fibrosis Foundation believes it is imperative that patients and those that treat them become more knowledgeable of IPF in order to better address patients’ needs.

With no FDA-approved therapies, a lung transplant is often the last resort for people with IPF. However, a lung transplant is rare – about 30 percent of IPF patients who are waiting for a lung transplant don’t survive long enough to have the surgery.

Symptoms like a dry cough that won’t go away, shortness of breath or unexplained weight loss are not always present until IPF has worsened. Additionally, the damage that IPF causes is permanent. The Pulmonary Fibrosis Foundation encourages patients to visit a physician if they are concerned about their symptoms.

For more information about IPF and resources for patients, please visit The Pulmonary Fibrosis Foundation at www.pulmonaryfibrosis.org.

This article is provided by Boehringer Ingelheim.

Cycling to help stop diabetes

2/15/2013

(BPT) - The American Diabetes Association is challenging bicycle riders to be part of the movement to Stop Diabetes(R) by participating in the annual Tour de Cure(R), a cycling event to raise funds to help fight diabetes. Tour de Cure is a fun way to get out with your family, friends or co-workers and has routes designed for all riders - from 5-mile family rides to 100-mile century rides. It is a ride, not a race, so participants are encouraged to go at their own pace.

If you have diabetes, you can join the Red Riders. This special program recognizes riders who have diabetes the day of the ride with a red jersey. During the Tour, participants call out "Go Red Rider" to encourage and celebrate the Red Riders who are fighting to manage their diabetes and live a healthier life.

"The Red Rider program is a great way for those with diabetes to gather the strength, courage and motivation to live well all the other days of the year when we aren't riding in Tour de Cure," says Mari Ruddy, founder of the Red Rider program. Ruddy has lived with diabetes for more than 31 years and is the director of TeamWILD Athletics: We Inspire Life with Diabetes, which provides eTraining programs and a fitness training camp for people with diabetes looking to use endurance walking, running, triathlons and cycling to improve their health.

Ruddy, describes the Tour de Cure as a celebration of health and wellness. "The Red Rider program gives us an opportunity to celebrate the hard work, dedication and teamwork it takes to manage this challenging and complex disease,” says Ruddy. “When we give a participant a red jersey that reads, 'I ride with diabetes,' it puts a face to the disease that says, ’This is what diabetes looks like: We get on our bikes and we Stop Diabetes.’” Ruddy will be riding in the Las Vegas, Twin Cities, Chicago and Michigan Tours in 2013.

Cycling is great exercise, but it is important to make certain your biking equipment is ready before hitting the road. Be sure to check brakes, grease the chain and make certain helmets still fit properly. Take a short ride around the neighborhood to ensure everything works and that the tires are sufficiently filled with air. If it’s been a couple of years since the bike was purchased or cleaned, it might be a good idea to take it to a bike shop to have all the gears and brakes inspected.

More than 65,000 cyclists are expected to participate in the Tour de Cure at sites throughout the country in 2013. All funds raised at the Tour de Cure events will go to support the American Diabetes Association's mission - to prevent and cure diabetes and to improve the lives of all people affected by diabetes.

Join Tour de Cure to benefit your health and to support the fight to stop diabetes. To register as an individual rider, a Red Rider, start a team, or learn more, visit www.diabetes.org/tour or call 888-DIABETES.

Rare Disease Day 2013: Maintaining bone health in people with multiple myeloma

2/18/2013

(BPT) - In honor of the sixth annual Rare Disease Day, celebrated on Feb. 28, it is important to drive awareness about some rare cancers that are many times undiagnosed until the cancer has already spread. One particular cancer, multiple myeloma, often goes undiagnosed until the disease has spread to the bone.

Multiple myeloma is a cancer of the plasma cells, a type of white blood cell found in the bone marrow. An estimated 70,000 people in the United States are currently living with multiple myeloma and once the disease has spread to the bone, patients will likely have a skeletal-related event in the back or ribs due to bone lesions. Patients may also have growths that form on the bone, which may cause difficulty walking. Additionally, patients’ bones may easily break or they may experience loss of appetite, nausea, thirst, fatigue, weakness or numbness.

“For people living with multiple myeloma, it’s extremely important to maintain their bone health,” says Dr. Doris Browne, oncologist and president and CEO of Browne and Associates, Inc.

Browne suggests the following tips and changes to a multiple myeloma patient’s diet, exercise routine and lifestyle modifications that can be made to help protect bone health. She advises it is very important to consult with a physician before engaging in any of these activities.

* Eat a well-balanced diet enriched with calcium and vitamin D. Low-fat dairy products, and foods and drinks with added calcium are good sources of calcium. Good sources of vitamin D include egg yolks, fatty fish, such as salmon and tuna, and milk with vitamin D. Some people may also need to consider taking nutritional supplements in order to get enough calcium and vitamin D in their diets. Fruits and vegetables also contribute other nutrients that are important for bone health.

* Get plenty of physical activity. Like muscles, bones become stronger with exercise. Good exercises for stronger bones are weight-bearing. Walking, climbing stairs and yoga are some good exercises to help build strong bones. Try to get 30 minutes of exercise each day. Remember, it is important to talk with your health care provider before starting physical activity.

* Live a healthy lifestyle. Avoid smoking, and, if you choose to drink alcohol, try not to drink too much.

* Prevent falls. Falling down can cause a bone to break, especially for someone with multiple myeloma. But most falls can be prevented. Check your home for dangers like loose rugs and poor lighting. Have your vision checked. Increase your balance and strength by participating in weight-bearing and strength-building activities.

Talk to your doctor about your bone health. If you are concerned about your bone health, go over your risk factors with your health care provider and ask which tests you may need.

To learn more, visit the To Stay in the Game, Maintain Your Frame website, www.MaintainYourFrame.com. To Stay in the Game, Maintain Your Frame is an educational program designed to educate the public about multiple myeloma, the importance of maintaining bone health, and the need for doctor-patient dialogue to be an active participant in their health. This program is a collaboration between Novartis Pharmaceuticals Corporation (“Novartis”) and the National Black Church Initiative (NBCI), a coalition of 34,000 churches across the United States.

New initiative celebrates unsung heroes of severe allergy awareness

5/9/2013

(BPT) - Individuals at risk for anaphylaxis – a severe, life-threatening allergic reaction – know the importance of having people around them who can help with allergen avoidance, such as bringing allergy-friendly food options to the company party or helping to shield from bees on the playground. Now, there is a new way to say “thank you” to the teacher, relative or co-worker who has made a difference in the life of an individual at risk for anaphylaxis. Sanofi US has launched a Severe Allergy Awareness Facebook page where individuals have a unique opportunity to create online awards via the “Celebrate Someone” app to recognize an unsung hero of allergy awareness.

Awards can recognize individuals, groups, companies or organizations, and for the first award someone makes, The Sanofi Foundation for North America will donate $5 to a patient advocacy group focused on severe allergies – up to $100,000 in total. The donations will benefit Food Allergy Research & Education (FARE), Kids with Food Allergies Foundation (KFA) and the Asthma and Allergy Foundation of America (AAFA).

“As a physician and someone at risk for anaphylaxis myself, I can tell you first-hand how reassuring others’ awareness about my severe allergies can be,” says Dr. Vivian Hernandez-Trujillo, a pediatric allergist, national expert in anaphylaxis and consultant to Sanofi US. “There are a number of people in my life who work to help ensure that I’m safe from my allergens and I look forward to recognizing them.”

Up to six million Americans may be at risk for anaphylaxis, although the precise incidence is unknown and likely underreported. Life-threatening allergic reactions may occur as a result of exposure to allergens including foods such as peanuts, tree nuts, fish, shellfish, dairy, eggs, soy and wheat; insect stings; latex and medication, among other allergens and causes. Several studies indicate that the rate of anaphylaxis has increased in recent years, pointing to the need for greater awareness.

It is critical that not only the individuals at risk for anaphylaxis and their immediate family members are aware of their allergens and how to help prevent severe allergic reactions, but that others in their community are as well, including teachers, friends, coaches and co-workers. The best prevention method of anaphylaxis is avoidance of the specific allergen(s). If anaphylaxis does occur and if treatment is not administered, the reaction can result in death within a matter of minutes.

“Like” the page today at www.facebook.com/severeallergyawareness and visit the “Celebrate Someone” app to create an award.

Igniting the conversation about rare diseases

2/18/2013

(BPT) - Each year, people across the world are invited to join together to raise awareness about rare diseases. Unlike more common conditions such as diabetes and breast cancer, many of these diseases, as well as the people affected by them, are not recognized by their own awareness initiatives throughout the year.

Yet for people living with rare diseases and their loved ones, the path to a confirmed diagnosis, adapting to new treatment regimens, and facing the day-to-day challenges of these diseases can often be overwhelming.

The goal of Rare Disease Day is to provide awareness of lesser known diseases, and to recognize each respective patient community while highlighting the great strides that are being made in medical research. This year, disease education activities will take place Feb. 28, with local events held across the globe to help build community support and awareness.

By definition, a rare disease is an illness that affects fewer than 200,000 people in the U.S. While individually, each of these approximately 6,800 such diseases in the U.S. are defined as rare, when considered together they impact nearly 30 million Americans or almost one in 10 people, according to the National Institutes of Health.

“Our organization understands the importance of Rare Disease Day and aims to provide a voice for patients and families to bring to light the need for continued development of new treatments,” says Mary Dunkle, Vice President for Communications, National Organization for Rare Disorders (NORD). “For example, people affected by rare diseases such as chronic myeloid leukemia or Cushing’s disease can feel alone, and share the burdens of minimal treatment options.”

Breakthrough research has sometimes put a more public face on rare diseases, such as chronic myeloid leukemia (CML), a cancer of the blood and bone marrow characterized by the presence of an abnormality called the Philadelphia (Ph) chromosome. Worldwide, CML is responsible for 10 to 15 percent of all adult cases of leukemia, with an incidence of one to two cases per 100,000 people per year. During the past decade, researchers have refined increasingly sensitive tests to detect traces of cancer in patients treated with new medicines.

The rare endocrine disorder, Cushing’s disease is a form of Cushing’s syndrome, in which excess cortisol production is triggered by the presence of a non-cancerous pituitary tumor. Cortisol is a vital hormone that regulates metabolism, maintains cardiovascular function and helps the body respond to stress. While incidence is one to two patients per million per year, Cushing’s disease is a serious, debilitating disorder. It most commonly affects adults from 20 to 50 years old and affects women three times more often than men. Cushing’s disease may present with weight gain, central obesity, a round, red full face, severe fatigue and weakness, striae (purple stretch marks), high blood pressure, depression and anxiety. It can cause severe illness and death with mortality up to four times higher than in the healthy population.

Rare Disease Day was originally created by EURORDIS, The European Organization for Rare Diseases, in 2008 and expanded to include the U.S. the following year with help from NORD. Since the inception, there have been significant advances in management of diseases that are defined as rare. The goal is to continue this momentum and keep the conversation going to encourage more progress.

To learn more information about CML, visit www.CMLEarth.com. To learn more about Cushing’s disease, visit www.cushingsdisease.com.

Five reasons Asian Americans should get tested for hepatitis B

4/25/2013

(BPT) - More than 1 million Americans have a lifelong, or chronic, infection of hepatitis B. This includes one out of every 12 Asian Americans. If you or your parents were born in Asia or the Pacific Islands, the Centers for Disease Control and Prevention (CDC) recommends that you get tested for hepatitis B.

Hepatitis B is common in many parts of the world and spreads easily. Many people with chronic hepatitis B got the virus as infants or young children when they came into contact with blood or other body fluids of someone with the virus.

“Asian American and Pacific Islanders make up 5 percent of the total population in the United States, but account for more than 50 percent of Americans living with chronic hepatitis B,” says Joan Block, executive director of the Hepatitis B Foundation (HBF) and co-chair of Hep B United, a national campaign to address and eliminate hepatitis B. “Testing for hepatitis B could save your life.”

Here are five reasons why you should get tested for hepatitis B:

1. Hepatitis B is serious

In the United States, chronic hepatitis B infection results in thousands of deaths per year. If left untreated, up to 25 percent of people with hepatitis B develop serious liver problems such as cirrhosis and even liver cancer. Liver cancer caused by the hepatitis B virus is a leading cause of cancer deaths among Asian Americans.

2. Two out of three Asian Americans with hepatitis B don’t know they are infected

People can live with hepatitis B without having any symptoms or feeling sick. Often, people don’t know they have hepatitis B until they have been tested.

“A staggering two out of three Asian Americans living with chronic hepatitis B do not know they are infected,” says Block. “Getting a simple blood test is the only way to know if you have been infected with the virus.”

3. Treatments can be lifesaving

Testing can help some people find out if they have hepatitis B in time to benefit from medical care and treatments that can save their lives. For many, treatments can help prevent serious liver damage.

“Because of the high rate of infection among Asian Americans, testing among this population is critical to identify people living with chronic hepatitis B and help them access lifesaving medical care,” says Jeffrey Caballero, executive director of the Association of Asian Pacific Community Health Organizations (AAPCHO) and co-chair of Hep B United.

4. The vaccine can protect people who have not been infected with hepatitis B

The hepatitis B vaccine is effective and can prevent many people from getting hepatitis B. People who get tested and do not have hepatitis B can get the hepatitis B vaccine. This protects them from getting the virus.

However, the vaccine cannot help people who already have hepatitis B. Many people with chronic hepatitis B were infected as infants or young children, before the hepatitis B vaccine was widely available. Hepatitis B spreads easily through blood or other body fluids, from someone who has hepatitis B, such as from an infected mother to her baby at birth. Today, the CDC recommends the hepatitis B vaccine for all babies born in the United States, as well as anyone else at risk for hepatitis B.

5. People who have hepatitis B can help protect their family

People who get tested and find out they have hepatitis B can encourage hepatitis B testing for family members and anyone living with them. Vaccinating family members who do not have hepatitis B can prevent further spread of the virus.

“Testing can also help identify other people, such as family members or sexual partners, who may be at risk for getting the disease,” says Caballero. “Remember, loving your family starts with caring for yourself, so talk to your doctor about getting tested for hepatitis B.”

How your unused airline miles can help a child

4/18/2013

(BPT) - Helping a child in need may be easier than you think, by redirecting a common resource that often just goes to waste.

Industry experts say Americans collectively are holding on to 9.7 trillion unused airline miles. Many people don’t have enough miles to qualify for reward travel. Others aren’t able to use the miles they have during the times that work for them. However, there is an easy way to use those miles to help change the lives of children with life-threatening medical conditions.

Make-A-Wish recently launched a concerted effort to raise airline miles and dollars to fund tickets for wishes that involve travel.

In 2012, Make-A-Wish granted nearly 14,000 life-changing wishes to children with life-threatening medical conditions; 74 percent, or 10,360, of those wishes required air travel. To cover the cost of all of those wishes, Make-A-Wish would have needed approximately 50,000 airline tickets or 2.5 billion airline miles, or $37.5 million. Every mile or dollar donated helps Make-A-Wish focus more resources on reaching more eligible children in communities across the country, granting their one wish.

Each wish-come-true is a powerful experience in the life of the recipient, and everyone involved. The wish experience often is a pivot point in the course of a child’s treatment, and can make them feel better, and in some cases, even help them get better. A wish strengthens families, reduces stress, provides happiness and inspiration, and helps create strong community bonds.

Make-A-Wish is committed to the vision of someday granting the wish of every eligible child, every year. To help move closer to that vision, Make-A-Wish is encouraging individuals to join other supporters, like WWE Superstar John Cena, in donating airline miles or dollars at wish.org/tickets. The donation of airline miles is quick and easy; all one needs is their frequent flier number and basic personal information. Watch the Make-A-Wish video “Help Wish Kids Take Flight.”

Digging soon? Call 811 first for safety's sake

3/5/2013

(BPT) - With winter forgotten and spring in the air, many homeowners are packing away their snow boots and rolling up their sleeves to get started on long-awaited home improvement projects. Across the country, homeowners and professionals alike will plan landscaping and home-improvement projects that require digging this season.

During the transition into “digging season,” Common Ground Alliance (CGA), the association dedicated to protecting underground utilities and the people who dig near them, reminds homeowners and professional diggers that calling 811 is the first step towards protecting you and your community from the risk of unintentionally damaging an underground line.

Every digging project, no matter how large or small, warrants a free call to 811. Calling this number connects you to your local one-call utility notification center. Installing a mailbox or fence, building a deck and landscaping are all examples of digging projects that should only begin a few days after making a call to 811.

Here’s how it works:

1. One free, simple phone call to 811 makes it easy for your local one-call center to notify all appropriate utility companies of your intent to dig. Call a few days prior to digging to ensure enough time for the approximate location of utility lines to be marked with flags or paint.

2. When you call 811, a representative from your local one-call center will ask for the location and description of your digging project.

3. Your local one-call center will notify affected utility companies, which will then send professional locators to the proposed dig site to mark the approximate location of your lines.

4. Only once all lines have been accurately marked, roll up those sleeves and carefully dig around the marked areas.

There are nearly 20 million miles of underground utility lines in the United States that your family depends on for everyday needs including electric, gas, water and sewer, cable TV, high-speed Internet and landline telephone.

Unintentionally striking one of these lines can result in inconvenient outages for entire neighborhoods, harm to yourself or your neighbors and repair costs. Every two minutes, homeowners and professionals unintentionally damage an underground utility line. This number can be dramatically reduced by calling 811 before digging.

According to the most recent data from CGA, damage occurs less than 1 percent of the time when the digger has called 811 before a project.

To find out more information about 811 or the one-call utility notification center in your area, visit www.call811.com.

The career paths that lead to everyday acts of heroism

5/17/2013

(BPT) - Often, we don’t think about heroism until we see it in action - when disaster strikes and ordinary people exhibit extraordinary courage and compassion to help victims in their time of need. The truth is, however, that the best of human nature is on display every day in the lives of millions of Americans who work in public service jobs across the country. Sometimes all it takes to tap that inner hero is an opportunity – and the education – to serve others.

“People may not realize how broad the opportunities are in public service fields,” says Connie Bosse, vice president of Kaplan University’s College of Public Service. “From law enforcement and emergency responders to teachers and child advocates and behavioral therapists who help children with developmental disabilities, thousands of career options offer people the chance to make a living and help others in a meaningful way.”

Numerous studies on job satisfaction show that workers in a broad range of fields say job satisfaction is important to them. Public service jobs such as firefighting, teaching and therapy consistently rank among the top most-satisfying careers in the General Social Survey conducted by the National Organization for Research.

Whether you’re a recent high school graduate looking for a direction in higher education or an established professional looking for a meaningful career change, public service holds many opportunities. The Kaplan University College of Public Service created a Network of Good video series which highlights alumni and their path to public service. As with any career, it’s important to receive the right training, education and degree to ensure professional success. Here are some degree paths that can lead to public service careers:

* Human services – A bachelor of science in human services can prepare you to work in a variety of fields, including mental health, social services, education, rehabilitation and even the courts. If you already have an associate or bachelor’s degree, you may be eligible for an accelerated degree path.

* Education – Graduate programs are designed to serve educators and instructors at every level, from colleges and universities to K–12 environments. There is also a bachelor in early childhood development that encompasses caring for the educational needs of young children and can extend far beyond the elementary school classroom. This degree can open doors to careers in childcare centers, Head Start programs and other before- and after-school care settings.

* Public administration – Strong leaders are vital to the success of any organization, whether public or private. A master’s in public administration can help you qualify to serve in leadership roles in local, state or federal government agencies, a variety of organizations and nonprofits.

* Homeland security – With natural disasters and terrorist threats making daily headlines, the federal government says demand for professionals qualified to work in homeland security and emergency response roles will increase. A master’s degree in homeland security and emergency management can help you find a career in emergency preparedness and response, border and transportation security, information analysis, homeland defense and more.

For those interested in learning more, there is a wealth of information, inspirational stories and videos about public service professionals at the Center for Public Service, an online information resource center created by Kaplan University. Visit the site at center-public-service.kaplanu.edu.

Rare diseases: Increasing awareness for better patient outcomes

2/13/2013

(BPT) - Getting a diagnosis of any cancer can be frightening, but for those diagnosed with a rare cancer, the emotional toll can be much worse. For some of these patients, the journey to a correct diagnosis may take years, and once they receive an accurate diagnosis, it can be extremely difficult for these patients to find accurate information on their disease. One of the first things patients do is research everything they can about their illness, including connecting with someone who is also living with the disease, and learning their options for disease management and treatment.

To help spread awareness for lesser known and potentially life-threatening diseases, hundreds of patient organizations across more than 60 countries will join together on Feb. 28, to observe the 6th annual international Rare Disease Day. On this day, patient groups will host events around the world to celebrate those living with and managing their diseases.

One particular rare disease that may take years to diagnose, is a cancer of the gastrointestinal (GI) tract called gastrointestinal stromal tumors, or GIST. These tumors often do not cause any specific symptoms, making GIST difficult to diagnose. The exact number of people diagnosed with GIST each year is not known. In the U.S. alone, the incidence of GIST is estimated to be up to 6,000 new cases each year.

“Many cases of GIST are discovered in urgent situations when patients are brought to an emergency room. This may results in significant complications since in these cases the disease is often at an advanced stage,” says Dr. Jonathan Trent, Sylvester Comprehensive Cancer Center at the University of Miami. “Through increased awareness, GIST and many other rare diseases may be able to be diagnosed sooner, potentially providing patients with disease management regimens earlier in their illness.”

Thanks to dedicated research and awareness initiatives by patient advocacy organizations and the medical community, there have been significant advances for patients living with GIST in recent years. Increasing awareness for rare diseases is paramount in helping patients get the right diagnosis and information about their illness. Organizations like GIST Support International are helping patients learn more about their disease every day.

“I have actively participated in GIST awareness following my own diagnosis in 1997, when the medical community had limited understanding of this disease, and there was no disease information available for patients, says Marina Symcox, GIST Support International. “At the time, I was able to find out some information from a local patient support group, and later decided to make disease education for other patients my personal mission.”

Because they are passionate information seekers, many patients living with rare diseases and their loved ones act as their own advocates in learning more about their disease and in helping to form their own multidisciplinary care team. With GIST specifically, this care team should include the diagnosing physician, a specialized oncologist and pathologist to work alongside the devoted caregiver or loved one. Each member of this multidisciplinary team has a unique and vital role in helping the patient cope with his or her disease.

To learn more information about GIST and other rare diseases, please speak with a healthcare professional or local advocacy organization, and visit YouTube.com/Novartis.

Rare Disease Impact Report quantifies patient and caregiver challenges on journey to diagnosis and beyond

4/9/2013

(BPT) - Getting a diagnosis is just the first of many challenges patients with rare diseases – and their caregivers – face.

“We went through a number of specialists until we found a team that finally looked at my daughter, Hannah, as a patient with unique needs,” says Carrie Ostrea of Las Vegas, Nev. “The process was filled with huge financial challenges. My husband was laid off from his job of five years and we had to continue to pay for insurance just so Hannah could continue getting treatments. The isolation was also incredibly difficult. Some of our family even stayed away from us because they couldn't handle the situation of us having a child with a rare illness.”

Hannah Ostrea was diagnosed with Gaucher Disease type 2/3, a fatal rare genetic disorder characterized by brainstem dysfunction, loss of primitive functions such as breathing and swallowing, low blood platelets, and enlargement of the liver and spleen. She passed away at age three.

Carrie Ostrea is just one of the 350 million people worldwide who are affected by rare diseases. While Carrie’s experience caring for her daughter – from diagnosis to treatment – was unique, the challenges she faced resonate with many patients and caregivers facing a rare disease. Specific challenges and new insights are featured in a first-of-its-kind Rare Disease Impact Report, commissioned by Shire Human Genetic Therapies. This Impact Report identifies and quantifies the health, psycho-social, and economic impacts of rare diseases on patients, families, and the medical community.

According to more than 1,000 survey responses from patients, caregivers, physicians, and payors who handle reimbursements for healthcare plans and governments/institutions in the United States and United Kingdom:

* It takes more than seven years in the U.S. and five years in the U.K. for a patient with a rare disease to receive a proper diagnosis

* On the journey to diagnosis, a patient typically visits up to eight physicians (four primary care and four specialists) and receives two to three misdiagnoses

* Physicians (both primary care and specialists) often don't have the time, resources and information to properly diagnose/manage patients with rare diseases, compared to more common diseases seen

* Due to the uncertainty, the lack of available information, resources, and economic strains, rare diseases take a major emotional toll on patients and their caregivers

Rare diseases are conditions that affect a small portion of the population, but are often chronic, progressive, degenerative, life-threatening and disabling. While individual rare diseases are uncommon and disparate, collectively there are about 7,000 different types of rare diseases and disorders that have been identified.

“The new insights featured in the Rare Disease Impact Report reinforce some of the major issues we see in the rare disease space, particularly the obstacles in getting adequate information and ongoing care,” says Nicole Boice, founder and CEO of Global Genes | RARE Project, and advisory board member for the Rare Disease Impact Report. “My hope is that these gaps identified in the report inspire the rare disease community to work together to create a better outlook for patients and their families.”

Visit www.RareDiseaseImpact.com to get more information and view the full Impact Report.

How to support your friend in a split

5/2/2013

(BPT) - When a marriage ends in divorce, it’s not just the couple who is involved. Friends and family members are also part of the process and often play many different parts – from objective confidant to reliable “vent-ee.” If you’re suddenly or unexpectedly thrown into this role, what help are you prepared to offer? Support can make a critical difference to your friend, but unfortunately, doesn’t come with how-to manual.

As the supporter of a friend going through a divorce, you may feel like you need a support group of your own. The blog, “Support in a Split,” found at www.supportinasplit.com, gives the average person basic tools to help their friends make it through divorce. Sponsored by ARAG, a global provider of legal insurance products and services, the blog provides lists, stories and real-life strategies to help people help their friends or family navigate divorce.

Whether your friends have just announced they’re going through some trials in their marriage or their divorce has been finalized after lengthy legal proceedings, you’re going to be there with them on every stage of the journey. If the journey ventures into topics you aren’t fully versed in, visit Support in a Split for background information on topics ranging from exercise routines, redecorating, entering the dating world, co-parenting and seeking professional therapists and attorneys.

For example, if your friend expresses concern about his or her marriage, encourage professional help to resolve differences. Or advise your friend to find an attorney if a resolution isn’t possible. Additionally, recommend your friend enroll in a legal plan to save money on legal fees in situations like divorce, creating a will or settling a dispute with a contractor. Many leading employers offer legal insurance and services as part of their benefits package. Recent ARAG research shows that members of a legal plan know where to turn when faced with a legal issue so therefore they are much less stressed than those without a legal plan.

When the divorce is finalized, your friendship will be needed to help your newly single friend get back on his or her feet. Sometimes divorce is viewed as liberating, while other times it can cause depression. Providing a supporting role can range from just listening and being around for the divorcee, to encouraging your friend to seek professional help and treatment for depression.

While helping a friend or loved one through a divorce is not easy, having knowledge and showing compassion can strengthen your bond with those affected. To better understand what you can do to support a friend going through a breakup, visit www.supportinasplit.com. And be prepared – situations change due to life-changing events like divorce, but that doesn’t necessarily mean your relationship has to change.

Technology can turn $25 into a family giving tradition

5/7/2013

Technology has been connecting families for generations. The invention of the phone let us hear voices of loved ones far away, and the creation of the Internet helped us to see them. Today, those same technologies that we’ve used to bring our families closer together are helping us to connect with and support families who are worlds apart. In doing so, the very concept and experience of “gifting” and philanthropy is being transformed.

For example, lending may not have fit into the philanthropy category in the past. Now, however, lending lets people go beyond traditional giving by using new technologies. The concept has grown dramatically through organizations like Kiva, which enables anyone with an Internet connection and $25 to make a micro-loan to one of thousands of low-income entrepreneurs in more than 65 countries, including the United States. Just go to www.kiva.org to find a borrower to whom you can lend $25 – it might be a mother in Uganda selling solar lights to pay for her children’s school supplies, a woman in Mongolia providing yogurt to local schools to help support her family, or a mom in Kenya using her dairy cow profits to help further her schooling.

You have an opportunity to make a big difference for women, families and communities – beyond traditional giving.

Since 2005, the nonprofit Kiva has been dedicated to alleviating poverty by connecting people through microlending. It has connected more than 900,000 lenders to more than 800,000 women around the world.

Millions of women globally work hard to shape future generations. Many of them do it, however, with close to nothing. Women make up the vast majority of the world’s poor. With limited resources, their potential is too often squandered – not only their potential to provide for their families, but also to achieve their dreams, educate their children, model gender equality and more. Consider these eye-opening statistics from Kiva:

* More than 1 billion people live in extreme poverty, and 75 percent of them are women and girls.

* Seventy-six million primary school-age children aren’t in school, and 60 percent of them are girls.

* Fifty percent of pregnant women in developing countries lack proper maternal care, resulting in more than 300,000 maternal deaths per year.

But when a woman contributes to her family’s income, at least 80 percent of her earnings go toward supporting her family’s needs and nurturing her children’s potential. A child born to a mother who can read is 50 percent more likely to survive past the age of five. Each year of additional schooling increases individual earnings by 10 percent.

And, by partnering with organizations that offer maternal health and education services on top of the loans, Kiva helps lenders make an even bigger impact on the lives of women and families.

You can send the special woman in your life a Kiva Card - $25 to lend to any borrower they choose. It’s the perfect way for her to connect with causes and places she cares about as she chooses borrowers she would like to support with your gift. Together, Kiva lenders have helped fund more than $420 million in loans. When the borrower repays a loan – and Kiva’s repayment rate is a 98.9 percent – your gift card recipient can choose a new borrower, so the cycle of support continues. Visit kiva.org/gifts to find out more about Kiva Cards.

Lending to caretakers – women in particular – has an incredible ripple effect that touches lives across families, communities and the world. Giving women the tools they need to create a brighter future is truly “the gift that keeps on giving.”

Sometimes, lending time is just as important as lending a dollar. To make volunteering more effective, it’s important to match people with the right skills to the right job. The website VolunteerMatch has emerged as a way for volunteers to find positions that match their skills and expertise, and for charities to recruit volunteers. There is no shortage of charities making change in the lives of women and families that can benefit from your volunteerism.

Whether you choose to give your time or money, or make a life-changing loan, it’s easier than ever to find ways to help others. Visit www.kiva.org to make a loan or give a woman you love a Kiva Card, giving her a gift that helps families around the world.