Stephanie Fischer

@RarePOV

patient & survivor. 🦓 Member of . Patient Advocacy & Partnerships Director at .

Bucks County, PA
Vrijeme pridruživanja: svibanj 2012.

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  1. proslijedio/la je Tweet
    prije 10 sati

    If you do nothing else in this life, live and work for something bigger than yourself. A shallow life or a self-serving life is a truly a life wasted. The world is full of causes and people in need.

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  2. proslijedio/la je Tweet

    Parents Sanam and Ben open up about their son, Eli, who has a genetic disorder that’s so rare it doesn’t even have a name yet. Hear about their fight for more research and find out how you can help find a cure. For more, visit .

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  3. prije 14 sati

    Amberly’s approach is Perspective, Acceptance, Community, Endurance & Rest. The most difficult for her is rest, because rest is looked at as a luxury in society but is really a necessity. <—I suspect this will resonate with people living with other , too.

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  4. prije 15 sati

    Thanks to who ! Today they featured Amberly who developed after her leg was severely injured in an accident: “34 surgeries was a lot but it was really the easiest part. The hard part is getting through the pain every day.”

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  5. proslijedio/la je Tweet
    4. velj

    Thank you to everyone who has followed along with the series. You can find resources for all of the workshops here:

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  6. 4. velj

    Robyn Correll Carlyle of : Translating materials into another language is useful but it should go beyond that. The examples used should be culturally relevant to the community you are hoping to engage.

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  7. 4. velj
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  8. proslijedio/la je Tweet
    4. velj

    Community health workers are a really important bridge to underserved populations. They can be your eyes and ears so that you know a community’s real concerns and needs.

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  9. 4. velj

    Regarding including minorities at much higher rates in for , of says “Good science requires it. Good treatments require it.” 👏👏👏

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  10. 4. velj

    Michael Hume of talks about venture philanthropy providing a seat at the table with other investors for conversations around pricing (as the voice of the patient community), and to bring the sense of urgency to discussions.

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  11. 4. velj

    Loved this video shown at . “I tell people I was born different. But we’re all born different, And that’s great.” Thank you to Eli for encouraging people to to folks who may look a little different, rather than staring or making mean comments.

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  12. proslijedio/la je Tweet
    4. velj

    Thank you for the shoutout ! We agree wholeheartedly with this sentiment! We as a community must elevate & support young motivated researchers to focus on to reach our long term goal of new therapies and one day, cures!

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  13. 4. velj

    Slide by Dr. Spencer of on how patient orgs can prepare for drug discovery & development makes me think of Young Investigator Draft. Providing early-stage researchers with funding is helpful as is recognizing their commitment.

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  14. 4. velj

    Listening to David Spencer of discuss how advocacy organizations can lay the groundwork for drug discovery & development, including natural history studies.

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    Please RT. Thumbs up . Every word in your powerful article is true. I, and millions of us who use American Sign Language, stand with you.

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  16. proslijedio/la je Tweet

    To ALL networks: next time at when the signer like is performing & America the Beautiful they should be on the broadcast the WHOLE time, not a few seconds. SHOW the beauty of ASL either in a bubble, split screen or next to singer It’s time!

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    👏👏 Please share Proud to be included in this awareness campaign by

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  18. 3. velj

    Exciting to see the list of organizations that will receive funding, tools & training from ! Congratulations to each of them, including , , & !

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  19. proslijedio/la je Tweet

    Love this ad and it's message. We need to reconsider our . While I admire and celebrate the incredible skill of athletes and actors, the scientists and researchers trying to save the lives of our kids are my heroes. How about you?

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  20. 2. velj

    “What if we lifted up scientists and doctors the same way we lift up professional athletes? What if we supported the world’s best & brightest researchers working on the next breakthrough treatment?” via &

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