About Us

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. We can do more with the science we already have and bring life-saving treatments to millions of people suffering from rare diseases.  Currently, there are fewer than 400 approved treatments for 7000 rare diseases affecting more than 30 million Americans. read more

Recent News


Act Now to Help Advance Newborn Screening Legislation in California

The EveryLife Foundation continues to work with more than 80 other patient organizations to expand the lifesaving potential of newborn screening in California. Pilot legislation (SB 1095) introduced in February would help eliminate the legislative delay in newborn screening and ensure that patients are treated as early as possible.Read More

Registration Open for Regional Legislative Conferences and In-District Lobby Days

Rare Disease Legislative Advocates will host In-District Lobby Days to facilitate meetings for rare advocates across the country with their elected federal officials during the summer Congressional recess (July 18th through September 5th). Registration is open through July 1st.Read More
rare artist elf

Join Us for Rare Artist Reception in San Francisco on June 7th

For Bay Area residents and those attending the Biotechnology Innovation Organization (BIO) International Convention in San Francisco, be sure to register for the Rare Artist reception from 4 to 7pm on June 7th. The EveryLife Foundation and event partners Audentes Therapeutics and JUICE Pharma Worldwide welcome you to join us to meet some of the artists and enjoy complimentary refreshments.Read More

Rare Disease Congressional Caucus Briefing on May 18th to Highlight Importance of FDA and NIH

Rare Disease Legislative Advocates in conjunction with the Rare Disease Congressional Caucus Co-Chairs will host a briefing on The NIH and FDA: Vital Agencies in the Fight against Rare Diseases on May 18th from 2:00-3:00pm at the Senate Capitol Visitors Center in Washington, DC.Read More

New Report Finds 560+ Medicines in Development for Rare Disease

The Pharmaceutical Research and Manufacturers of America (PhRMA) recently released a new report on Medicines in Development for Rare Diseases which lists more than 560 medicines in development for rare disease. This is a dramatic increase from the previous report released in October 2013 which found more than 450+ medicines in development for rare disease.Read More