Community Gets Vocal to Make Rare Diseases Even Rarer

(BPT) – Did you know that 1 in 10 people in the US have a rare disease1? That means you or a loved one probably know someone who is affected by a rare disease, but do you know what it’s like to live with one of these isolating conditions? Today there are approximately 7,000 different known rare diseases ranging from rare forms of cancer to debilitating genetic diseases, with new diseases being identified regularly2.

On February 28, the seventh annual International Rare Disease Day, hundreds of patient advocacy organizations, patients and their loved ones across the globe join together to help illustrate that rare diseases are not just statistics, but affect people. This year the community is coming together to raise awareness and “get loud” with a unified voice.

“Receiving the diagnosis of any illness fundamentally changes your life, but people affected by rare and uncommon diseases face an entirely different and particularly challenging spectrum of issues, from feelings of isolation to difficulty finding basic disease information and a support community that addresses their specific needs,” said Walter Capone, President and Chief Executive Officer of the Multiple Myeloma Research Foundation. “We want all people living with rare diseases to know that they are not alone.”

Many rare diseases can be life threatening or fatal, including some cancers like multiple myeloma, which today impacts approximately 81,000 people living in the United States3,4. Multiple myeloma is the second most common blood cancer, but since it impacts less than 200,000 people in the US it is still considered a rare disease2,5.

Like other rare diseases, patients with multiple myeloma may feel alone in their diagnosis. Treating the disease also presents a medical challenge, though research is underway and advancements are being made. Those living with multiple myeloma are in need of new therapies since there is also a population of people who may experience a relapse of the disease or stop responding to currently available treatments4.

Although patients with rare disease and their families face many challenges, progress is being made every day; Rare Disease Day is a chance to recognize both rare disease patients’ strength and continued progress. It’s important to come together and amplify our voice with the community to raise awareness and improve access to emotional support, resources and treatments. In the US, Novartis, a company committed to helping patients, focuses on helping those with rare diseases through clinical innovation and research, development of patient resources and coordination with patient advocacy groups. For more information about the online resources available for patients and caregivers, please visit

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  1. National Organization for Rare Disorders. Rare Disease Information. Available at: Accessed January 2015.
  2. National Center for Advancing Translational Sciences. FAQ About Rare Diseases. Available at: Accessed January 2015.
  3. American Cancer Society. Multiple Myeloma. Available at Accessed November 2013.
  4. The Leukemia and Lymphoma Society. Myeloma. Revised 2013; 1:48.
  5. National Cancer Institute. A Snapshot of Multiple Myeloma. Accessed November 2013.

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