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  • In-District Lobby Days GKAR1

    In-District Lobby Days

    One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days…

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  • 21st century cures

    House Energy & Commerce 21st Century Cures Initiatives

    21st Century Cures announces round table on personalized medicine, Wednesday, July 23, 2014 – 10:00 am EST in Rayburn 2123. Personalized medicine is facing the same regulatory challenges that Rare Disease patients have faced for decades.

    The Energy and Commerce

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  • AskyourCandidates

    Ask Your Candidates! where they stand on medical progress

    Research!America’s Ask Your Candidates! program is the only voter education initiative focused on our nation’s commitment to medical and other health-related research. The AYC! project will run through the elections on Tuesday, November 4, 2014. With the help of Research!America, voters

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  • FEATURED cAUCUS CO-CHAIRS

    Meet the Rare Disease Congressional Caucus

    More than 160 Advocates joined RDLA for it’s 3rd Lobby Day in Washington, DC to encourage  Members of Congress to join the Rare Disease Caucus.   The new list of Members has just been updated!…

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Jun
23

Floor Vote for Newborn Screening Saves Lives Reauthorization Act (H.R. 1281) may be coming this week

The House is scheduled to vote this week – as early as Tuesday – on the Newborn Screening Saves Lives Reauthorization Act (H.R. 1281). Attached is the coalition letter, signed by the EveryLife Foundation as well as many other Rare Disease groups, urging House leadership to schedule this important vote. This bipartisan legislation will help ensure that infants continue to receive comprehensive, effective and lifesaving screenings for genetic and endocrine conditions soon after birth.

NBSSLRA(HR1281) House Vote Letter

Jun
16

In-District Lobby Days

In-District Lobby Days GKAR1

One of the most important parts of being a rare disease advocate is building relationships with your Members of Congress, your state and local legislators, and other advocates in your community. Click below to register for RDLA’s In-District Lobby Days

For help and questions contact Andy Russell @ 415 884-0223, arussell@everylifefoundation.org

 July 11th Deadline to Register to Participate Read More

Jun
6

Rare Disease Report features the OPEN ACT (Orphan Product Extensions Now Accelerating Cures and Treatments)

The June 3rd edition of The Rare Disease Report has an article detailing the goals of the OPEN ACT, which aims to help rare disease patients through “rare purposing”. The OPEN ACT  (Orphan Product Extensions Now Accelerating Cures & Treatments) and was originally introduced by EveryLife Foundation President, Dr Emil Kakkis, at the World Orphan Drug Congress in April.
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Take Action

The Immune Deficiency Foundation Requests Support for Legislation: H.R. 460 Patients Access to Treatment

Under many private insurance plans, patients with rare diseases continue to pay extremely high out-of-pocket costs because their prescribed medication is often placed on a “specialty tier.” Specialty tiers allow plans to impose high coinsurance, in lieu of a co-payment

Sign on to CMS Letter to Ensure Patients with Chronic Disease Have Access to Treatments

Join the AIDS Institute, Epilepsy Foundation, and National Alliance on Mental Illness in signing on to a letter to the Centers for Medicare & Medicaid Services (CMS) to ensure patients with chronic diseases have access to affordable treatments.  If your organization

How to Attend a Congressional Town Hall

Taking part in a public or town hall meeting is a great way to build a relationship with your Member of Congress and his or her staff and to raise the profile of the rare disease community to policy-makers.  Such …

Sign on to Support the Undiagnosed Diseases Research & Collaboration Network (HR 1591)

The “Network” created by H.R. 1591 will help reduce the length of time and number of physicians it currently takes to diagnose patients with a rare disease by creating a professional physician collaboration network and providing a means to collect …

Alliance for a Stronger FDA

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