Join IFCR Now!

IFCR Store

Partner Login

User Name:    Password: 

Glyn's Gift

The beginnings of CDKL5
Our Next Event

Natural History Study

Learn More
News

iPS Disease Modeling and Drug Development in CDKL5

Dr. Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has ... Learn More

GoodSearch: You Search...We Give!

Rare Disease Day February 28, 2017

 

The International Foundation for CDKL5 Research will be participating in the 8th annual observance of Rare Disease Day in the U.S. on February 28, 2017.

“Research”

The Rare Disease Day 2017 global theme, ‘Research.’ brings hope to people living with a rare disease. "With research, the possibilities are endless!"

There are nearly 7,000 rare diseases and disorders that affect nearly 30 million AmericansAlmost 1 in 10 Americans are suffering from a rare disease and mroe than half are children.

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. 

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 2017 and a member of NORD (National Organization for Rare Disorders).

Get Involved – 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 2017 materials such as flyers, logos, banners, and social media badges and banners.

For more information on Rare Disease Day in the U.S., please visit www.rarediseaseday.us. Check out Global Rare Disease Day Activities at www.rarediseaseday.org.

Information taken from www.rarediseaseday.us and www.rarediseaseday.org

 

 

© 2017