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


Travel Stipends Now Available for Regional Legislative Conferences in Boston, Chicago and Seattle

Rare Disease Legislative Advocates (RDLA) is hosting regional Legislative Conferences across the country later this month as well as In-District Lobby Days during the summer Congressional recess. We want to ensure that Members of Congress hear directly from constituents affected by rare disease about the need to advance the 21st Century Cures Act as well as other legislative priorities for the rare community.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

FDA to Offer Grants for Natural History Studies

The goal of the Orphan Products Natural History Grants Program is to support studies that advance rare disease medical product development through characterization of the natural history of rare diseases/conditions, identification of genotypic and phenotypic subpopulations, and development and/or validation of clinical outcome measures, biomarkers and/or companion diagnostics.Read More