EveryLife Foundation Launches National Burden of Rare Disease Survey

The EveryLife Foundation for Rare Diseases, a public policy nonprofit organization, said it launched a national survey aimed at capturing the financial and social cost of rare diseases. 

Photo: Annie Kennedy, EveryLife Foundation for Rare Diseases chief of policy and advocacy

The National Burden of Rare Disease Survey was developed by the Everylife Foundation in collaboration with the rare disease community and health economists. It is made possible with support from Mallinckrodt Pharmaceuticals, Sanofi Genzyme, Retrophin, Sarepta Therapeutics, Alexion Pharmaceuticals, Genentech, PhRMA, RegenxBio, and Spark Therapeutics. The EveryLife Foundation for Rare Diseases developed this survey in collaboration with the rare disease community and health economists. 

“It is essential for every rare disease patient in America to take this survey,” said Annie Kennedy, EveryLife Foundation for Rare Diseases chief of policy and advocacy. “Every day, millions of Americans carry the heavy financial burden of rare disease – losing time from work, paying for treatments and medical equipment not covered by insurance, financing home and vehicle modifications to accommodate their disease progression, and paying for personal caregivers.”

Kennedy said these costs need to be taken into consideration by decision makers when forming healthcare policy. 

All survey respondent data is anonymous. The aggregated results (weighted to reflect the larger underlying population) will be released in a journal manuscript later this year.

The deadline to take the survey is Sunday, July 19th.  

Author: Rare Daily Staff