EveryLife Foundation

@EveryLifeOrg

Nonprofit org. dedicated to advancing the development of treatment & diagnostic opportunities for rare disease patients through science-driven public policy.

Vrijeme pridruživanja: prosinac 2009.

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  1. In a letter sent to Congress the Foundation along with dozens of patient advocacy organizations, urged Congress to enact policies that would help ensure prompt and equitable access to innovative treatments, such as gene therapy -->

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  2. "I didn’t have to words to articulate my pain so I painted my hopelessness onto paper". Shaniah ( Contest Awardee) Check out her full story here -->

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  3. 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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  4. 3. velj

    "My disease keeps me from doing so much, but I still try to find times to shoot and create". -Jenn ( Contest Awardee) Check out her full story here -->

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  5. 31. sij

    "Cardiomyopathy is a rare heart condition that has affected my entire family. My dad has it, and my two older brothers died from it. This drawing, is in honor of them".-Lauren ( Contest Awardee) Check out her full story here -->

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  6. 31. sij

    Congratulations to our 2019 awardee Isabel Bueso for having the honor to attend the for her advocacy work as 's guest

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  7. 29. sij

    To do nothing - because we cannot do everything - would be irresponsible.

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  8. 29. sij

    "Is some access better than no access? Is it possible to prioritize the need of one dying child over another? There are no easy answers. Thank you to the developers who recognize expanded access as an imperative". -Annie Kennedy Chief of Policy and Advocacy

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    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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  10. 29. sij

    "My left hand is completely paralyzed and I have limited motion in my right hand. I can’t hold a pencil or paint brush so I paint with my mouth". -Alex (2019 Rare Artist Contest Awardee) Check out his full story here -->

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    27. sij

    Learn about exciting changes regarding expanded access to medications that have the power to improve lives at the third annual Expanded Access Summit in Washington, DC starting today!

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  12. proslijedio/la je Tweet
    28. sij
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  13. 27. sij

    Hannah Heinrich is a sibling of not one but two that have rare medical diseases... her dream is to ease the pain of family members going through a rare disease. (2019 Rare Artist Contest Awardee) Check out her full story here -->

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  14. 24. sij

    We are working with and to better understand how we can support young adults (16-30 years old) in the rare disease community. Which of the following topics are you interested in learning more about?

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  15. 24. sij

    "One of the best attributes of healing from any disease is to have hope that a new dawn will arrive and you will get to breathe in life" (2019 Rare Artist Contest Awardee) Check out her full story here -->

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  16. 22. sij

    "Even in our darkest moments living with a rare chronic disease, we find the joy and bursts in the simple things in life" -Jennifer Virag (2019 Rare Artist Contest Awardee) Check out her full story here -->

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  17. 21. sij

    The brings together world leaders who are integrating treatment-use trials in the clinical development of new therapeutics for serious diseases. To register visit -->

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  18. 20. sij

    "I was born with Hurler Scheie and diagnosed at the age of 5. At the time, my life expectancy was only the early teens. I’m now 22 years old, a college graduate, and I’m living my best life possible". - Bryce Czekansi (Based on an original painting by Jane Font)

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  19. 17. sij

    "Nature has always helped me through tough times and has been a heavy inspiration". - Chloe Hoover (2019 Rare Artist Contest Awardee) Check out her story -->

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  20. 16. sij

    "Dreams do happen, and great things happen in effort" -Mark Dant

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