Washington, DC—February 21st, 2017—The Fibrous Dysplasia Foundation has joined forces with 30 million Americans and health care advocates around the world for Rare Disease Day® on February 28. Rare Disease Day is an annual awareness day dedicated to elevating public understanding of rare diseases and calling attention to the special challenges people face.
The Fibrous Dysplasia Foundation is the leading international organization in the fight against fibrous dysplasia and McCune-Albright syndrome (FD/MAS), and related disorders including cherubism. The Fibrous Dysplasia Foundation serves the FD/MAS community through programs of support, education and research.
“For the FD/MAS community, this may be the most important Rare Disease Day yet. With upcoming changes to healthcare laws in the US, it is vital that we raise awareness of the issues faced by people living with rare diseases,” said executive director Deanna Portero.
Portero will be joining other leaders in the rare disease community on March 1st to visit federal lawmakers, and inform lawmakers about the important needs of people with FD/MAS and cherubism.
The theme for Rare Disease Day® 2017 is “research.” For the third year in a row, Team FD has registered with the University of Pennsylvania Orphan Disease Center to raise funds for FD/MAS research through the Million Dollar Bike Ride. Supporters can set a fundraising goal, and start fundraising for FD/MAS research in under 5 minutes. Click here to learn how. Funds from this fundraiser are crucial for continuing the fight against FD/MAS.
According to the National Institutes of Health (NIH), a disease is rare if it affects fewer than 200,000 people. Nearly 1 in 10 Americans live with a rare disease—affecting 30 million people—and nearly half of these patients are children. There are more than 7,000 rare diseases and only approximately 450 FDA-approved medical treatments.
Rare Disease Day takes place every year on the last day of February (February 28 or February 29 in a leap year)—the rarest date on the calendar—to underscore the nature of rare diseases and what patients face. It was established in Europe in 2008 by EURORDIS, the organization representing rare disease patients in Europe, and is now observed in more than 80 nations. Rare Disease Day is sponsored in the U.S. by the National Organization for Rare Disorders (NORD)®, the largest and leading independent, nonprofit organization committed to the identification, treatment, and cure of rare diseases.
For more information about Rare Disease Day in the U.S., go to www.rarediseaseday.us. For information about global activities, go to www.rarediseaseday.org. To learn more about fibrous dysplasia/McCune-Albright syndrome (FD/MAS) or cherubism, visit the Fibrous Dysplasia Foundation’s website, www.fibrousdysplasia.org. To search for information about rare diseases, visit NORD’s website, www.rarediseases.org.
Deanna Portero, Fibrous Dysplasia Foundation, 917-513-2169, firstname.lastname@example.org
Jennifer Huron, NORD, 203-744-0100, email@example.com