RDLA

@RareAdvocates

A program of the EveryLife Foundation committed to growing the patient advocacy community and working collaboratively, thereby amplifying the patient voice!

Vrijeme pridruživanja: srpanj 2012.

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  1. Prikvačeni tweet
    3. sij

    REGISTRATION is officially OPEN for on Capitol Hill. Visit and join more than 800 advocates for a unique experience. Are you ready to make a difference and have your voice heard?

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  2. proslijedio/la je Tweet
    3. velj

    Rare Disease patients need access to more cures, not less! Please tell Congress to reject dangerous IPI proposals that could impact the availability of already scarce treatments and quality of care. For more info visit -->

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  3. 3. velj

    We are pleased to work with on establishing the FDA’s Rare Disease Day Public Meeting during To register please visit -->

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  4. 31. sij
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  5. 31. sij

    Only 3 more weeks until in Capitol Hill! To register visit All events are FREE, but previous registration is required. Who's joining us for ?🙌

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  6. 31. sij
    Prikaži ovu nit
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  7. 30. sij

    What do you hope to get out of ? Share your answer and include your Name/State for a chance to appear in our 2020 Rare Disease Week Program.

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  8. 29. sij

    ATTENTION new and experienced advocates! We want to give you as much information as possible and answer all your questions before you head to Washington D.C. Visit and make sure you register for our February Webinars.

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  9. proslijedio/la je Tweet
    27. sij

    Members of the Scleroderma Foundation will be attending Rare Disease Week, February 25-28. Join US! Register here: .

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  10. proslijedio/la je Tweet
    26. sij
    Odgovor korisnicima

    This is what I love about Rare Disease Week in DC by . Many diseases...one united voice

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  11. 23. sij

    We are pleased to work with on establishing the FDA’s Rare Disease Day Public Meeting during To register please visit -->

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  12. proslijedio/la je Tweet
    21. sij

    Very excited that my daughter and I are going to Washington DC this year for and . Are any of my or friends going to be there? hope to see you!

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  13. 16. sij

    ATTENTION ALL PATIENT ORGANIZATIONS! The National Burden of Rare Disease Study aims to determine the true economic cost of rare disease. We're seeking the participation of patient organizations to be part of a survey. Please email Kara Mossler kmossler@everylifefoundation.org

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  14. proslijedio/la je Tweet

    I am proud to join the Rare Disease Caucus to advocate for patients and health professionals. As a member of , I remain committed to promoting education, spreading awareness, & supporting research to put an end to rare diseases like ALS, pancreatic cancer, & more.

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  15. 14. sij

    Thank you to John Rutherford (FL-04) for joining the Rare Disease Congressional Caucus, bringing our total to 161 members! Thank you to all of the advocates who have spread the word to their Members of Congress and encouraged them to join the Caucus!

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  16. 13. sij

    On January 16th join us for the 2020 Legislative In-Person Meeting and Webinar. These meetings help facilitate open dialog about legislation that affects the rare disease community. To register visit 👉

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  17. proslijedio/la je Tweet

    Check out our top 50 Advocates to follow for 2020 list just published in Winter, including:

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  18. 9. sij

    That's great news! Can't wait to see everyone on 🙌

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  19. 9. sij

    About "A 10 minute meeting with your member of Congress can have a huge impact that will last years" -Steve Silvestri (Director of Public Policy) For full interview visit and REGISTER NOW 👉

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  20. proslijedio/la je Tweet
    3. sij

    Registration is OPEN for on Capitol Hill! Join at the and on Capitol Hill February 24-February 29th

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