The International Foundation for CDKL5 Research will be participating in the 7th annual observance of Rare Disease Day in the U.S. on February 28, 2015.
“Living with a Rare Disease – Day-By-Day, Hand-In-Hand”
Rare Disease Day 2015 puts the focus on the daily lives of patients, families, and caregivers who are living with a rare disease.
Many people with rare diseases can say that access to care involves not just one person, but a team. This year on Rare Disease Day 2015, we celebrate all who come together to support the rare disease community. From the doctors at a center of excellence, to the home health nurses, to parents and families who provide care on a daily basis, this year is about the unsung heroes who commit themselves to a community that might otherwise not get the attention it deserves.
As we celebrate, we also recognize the exciting advancements in medical research and policy developments that are expanding hope in the rare disease community. Every patient story is different and so is every need. Some patients have less extensive diseases while for others, managing their care is a full-time job. We as a community work toward the goal that no patient should go without, no matter how rare or involved their condition may be.
According to www.rarediseaseday.us, in the U.S., a rare disease is classified as a disease that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983. This definition varies slightly from the definition of a rare disease in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. Almost 1 in 10 Americans are suffering from a rare disease. Along with dealing with specific medical problems, people with a rare disease struggle to get a proper diagnosis, find information, and get treatment. Because the conditions of the disease are so rare, medical research is often underfunded.
The IFCR is excited to be a part of Rare Disease Day 2015 and a member of NORD (National Organization for Rare Disorders).
Take Action Now – Here you will find suggested activities, in-school activities, Handprints Across America, press kit, and other resources
You can also download and share Rare Disease Day 2015 materials such as flyers, logos, banners, and social media badges and banners.