Dear friends,
Rare Disease Day is just a few days away. February 28th is a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! Here are a few ways to recognize the day:
For the past year, FARA and the National Ataxia Foundation (NAF) have been working to get “hereditary ataxia” added to the Congressionally Directed Medical Research Program (CDMRP). The CDMRP focuses on funding high impact, high risk, and high gain research projects. Since its origin in 1992, the CDMRP has funded $17.8 billion dollars for research. Congress decides which conditions to include and how much money to appropriate for each area of research. If “hereditary ataxia” were added to the CDMRP, it would provide a new source of funding for FA researchers. FARA and NAF are currently building a coalition of support for this initiative among Congressional Members and you can help!
Sincerely,
Jen
Jennifer Farmer,
FARA Chief Executive Officer
Other topics in our March Monthly update:
Rare Disease Day is just a few days away. February 28th is a day to raise awareness of the over 7,000 rare diseases that impact over 300 million people globally! Here are a few ways to recognize the day:
For the past year, FARA and the National Ataxia Foundation (NAF) have been working to get “hereditary ataxia” added to the Congressionally Directed Medical Research Program (CDMRP). The CDMRP focuses on funding high impact, high risk, and high gain research projects. Since its origin in 1992, the CDMRP has funded $17.8 billion dollars for research. Congress decides which conditions to include and how much money to appropriate for each area of research. If “hereditary ataxia” were added to the CDMRP, it would provide a new source of funding for FA researchers. FARA and NAF are currently building a coalition of support for this initiative among Congressional Members and you can help!
Sincerely,
Jen
Jennifer Farmer,
FARA Chief Executive Officer
Other topics in our March Monthly update:
- FARA Funded Research
- Pharma News
- Minutes of Science
- Open & Enrolling Studies
- Patient Registry
More...
