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RECENT NEWS

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Travel Stipend Applications Open for Rare Disease Week on Capitol Hill 2018

The EveryLife Foundation will provide travel stipends ranging from $400 to $1000 to enable advocates from across the country to participate in Rare Disease Week on Capitol Hill, to be held from February 25th through March 1st, 2018. The deadline to apply is December 10th.
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Funding for CHIP Has Expired

Congress has missed the September 30 deadline to renew funding for the Children’s Health Insurance Program (CHIP). CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. A majority of states will deplete their CHIP dollars by March and some by December of this year.
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Meet 2017’s RareVoice Nominees: Federal or State Advocacy by a Teenager

In this series, we will be introducing you to rare disease advocates who made an impact at the state and federal level. These passionate teens are all nominated for RareVoice awards in the “Federal or State Advocacy by a Teenager” category.

About RDLA

Rare Disease Legislative Advocates is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. By growing the patient advocacy community and working collectively, we can amplify our many voices to ensure that rare disease patients are heard in state and federal government.

Latest Tweets

  • Tweet Avatar @eiryngs You can list more than one, and undiagnosed patients are welcome to apply. 22 hours ago
  • Tweet Avatar @eiryngs We hope to have many rare diseases represented. We Wouldn't want to give 25 stipends to advocates w/ one disease & none to another 2 days ago