Newborn Screening Bill Passes California State Senate

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


Foundation Priorities Included in Draft PDUFA VI Commitment Letter

Late last week, the Food and Drug Administration (FDA) released the draft commitment letter for the Prescription Drug User Fee Act (PDUFA), explaining how it will utilize the user fees from the biopharmaceutical industry which make up a significant portion of the Agency’s human drug review budget.Read More

Nominations for Fifth Annual RareVoice Awards Due by July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader or advocate in a state or in our nation? Rare Disease Legislative Advocates (RDLA) is seeking nominations for the RareVoice Awards to be given on November 16th in Washington, DC.Read More

Chicago-Area Advocates' Participation in Rare Disease Congressional Caucus Briefing Highlighted in Chicago Tribune

When Kayla Martinez was given the opportunity to attend a congressional caucus hearing in Washington, D.C., to spread awareness of a rare disease she suffers from, she knew she wanted to go. Martinez, 12, a seventh-grader at Oak Park-based St. Giles School and an Elmwood Park resident, has neonatal onset multisystem inflammatory disease. The rare disease congressional caucus briefing took place on May 18.Read More

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

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