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DONATE NOW

Ask Your Senators to Support Paid Family and Medical Leave

The U.S. House of Representatives has passed the Build Back Better Act, and now it’s time for the Senate to act so this legislation can be signed into law! Contact your Senators now and let them know that the rare disease community is counting on them to include paid...

What’s Your Story?

The EveryLife Foundation for Rare Diseases launched What’s Your Story?, an online rare disease story bank for advocates like you to share your experiences on a wide-range of issues impacting the rare disease community. What’s Your Story? presents a series...

The STAT Act

The Speeding Therapy Access Today, or STAT Act, H.R. 1730/S. 670, is a bipartisan bill that was created with the input of the rare disease community aimed at improving the development of and access to therapies for the rare disease community. The centerpiece of the...

For those who currently live in Pennsylvania

PA patients need the right medicine at the right time! Step therapy, often called “fail first,” is a process that requires patients to take one or more alternative medications chosen by their insurer before permitting patients to access the...

Giving Tuesday, November 30, 2021

An event NOT to be missed!  Whether it’s doing an act of kindness, speaking out for a cause that matters to you, or donating to a favorite nonprofit, every act of generosity counts and each means more when we give together…this is the spirit of Giving...