Andra Stratton

@livinlavidalopo

Rare Disease Advocate, Speaker. Podcast Host for . Always hungry. Sometimes funny. Opinions are my own.

New Mexico, USA
Vrijeme pridruživanja: lipanj 2019.
18 fotografija ili videozapisa Fotografije i videozapisi

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  1. proslijedio/la je Tweet
    3. velj

    Big news: We’re funding 30 patient-led organization to support their launch of research networks in their search for treatment options

    17 replies 84 proslijeđena tweeta 273 korisnika označavaju da im se sviđa
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  2. proslijedio/la je Tweet
    3. velj

    Relentless collaboration and urgency. Thankful to the and team. This represents progress and critical activation for our community.

    Transformational news: has been selected to join the Network, powering our community to activate a collaborative network of KIF1A researchers & innovators working toward KAND treatment!
    1 proslijeđeni tweet 29 korisnika označava da im se sviđa
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  3. proslijedio/la je Tweet
    4. velj

    Congratulations! This is huge. So excited for to be in the network with you. Can’t wait to ge to work! ... or keep working!

    The Yaya Foundation for 4H Leukodystrophy is beyond excited that has selected us to join the Network. We are committed to finding a therapy or cure for , a devastating ; this amazing opportunity will change the trajectory of our efforts.
    1 reply 1 proslijeđeni tweet 8 korisnika označava da im se sviđa
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  4. proslijedio/la je Tweet
    2. velj

    Worldwide, 100 million people will watch the . 3x that many battle every day. is proud to work with  amazing advocacy organizations like to provide hope to those families through the power of sport!

    19 proslijeđenih tweetova 42 korisnika označavaju da im se sviđa
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  5. 1. velj

    Just when you summit one mountain, you realize there are many more.

    1 reply 7 proslijeđenih tweetova 22 korisnika označavaju da im se sviđa
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  6. 30. sij

    Loved the episode! Also always happy to hear a shout out for . Plus, I'm a big fan so I love the discussion!

    Today's episode features Daniel DeFabio. He is a to a son with disease and co-founder of with
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    1 reply 2 proslijeđena tweeta 13 korisnika označava da im se sviđa
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  7. 30. sij

    Pretty funny!

    Do not underestimate the appreciation for Dad jokes that abounds in the med-sci world. I'm scrolling through a very serious presentation on gene therapy that dedicated a whole slide to this gem: Why don't ants get sick? . . . . . Because they have anty bodies.
    1 korisnik označava da mu se sviđa
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  8. proslijedio/la je Tweet
    28. sij

    And oh we are without wheelchairs because air travel is not accessible, neither is finding a vehicle to transport you around in a different state!

    2 proslijeđena tweeta 4 korisnika označavaju da im se sviđa
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  9. 26. sij

    So important to reframe the ways in which we have documented history.

    I really appreciate this display at the American Museum of Natural History. I grew up looking at images like this, but here text call-outs explain the racist, sexist, & just plain wrong version of history that was presented as “true”
    1 proslijeđeni tweet 2 korisnika označavaju da im se sviđa
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  10. proslijedio/la je Tweet
    26. sij

    ❤️ THIS! nailed it with this view of the community.

    Yesterday, I had the privilege to be a part of the offsite. As I listened I was struck by the epiphany that while our fights have many names, we are one community working to remake broken systems to see us all as people with limitless potential.
    3 proslijeđena tweeta 14 korisnika označava da im se sviđa
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  11. 24. sij

    No joking, this is me before leptin therapy.

    2 korisnika označavaju da im se sviđa
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  12. 24. sij

    It is not uncommon for me to hear "You are so lucky to have lipodystrophy because you can't get fat." The truth is, fat cells are far more complex than someone's weight or appearance. Erasing Societal Stereotypes: 9 Truths about Weight via

    5 korisnika označava da im se sviđa
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  13. 24. sij

    I understand that open access is not a clear cut issue but we've got to move in the right direction.

    Patients and scientists: THIS IS NOT A DRILL. The White House is considering requiring open access to all taxpayer-funded research. Please sign to let The White House know that you strongly support this transformational initiative:
    1 proslijeđeni tweet 1 korisnik označava da mu se sviđa
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  14. 23. sij

    Getting FDA approval is only half the battle. Access to rare treatments is an endless battle.

    What it's like relying on one of the most expensive drugs in the world for survival:insurance denials, long convos with doctors and insurance companies, the insurance company not understanding "life-threatening condition" or "life-saving meds."
    1 reply 9 proslijeđenih tweetova 17 korisnika označava da im se sviđa
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  15. 23. sij

    Great info!

    We're glad you find this resource helpful. Thanks for sharing.
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  16. proslijedio/la je Tweet
    23. sij

    Rare disease patients carry the burden of being asked (both explicitly and implicitly) to speak for a whole minority community, to educate people who haven't put in any effort themselves. It is exhausting.

    10 proslijeđenih tweetova 34 korisnika označavaju da im se sviđa
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  17. 15. sij

    Calling all Rare in Michigan:

    On behalf of Lipodystrophy United, I am excited to have worked alongside the University of Michigan to help organize an official Rare Disease Day Educational Conference! If you are in the Ann Arbor area, we would…
    1 proslijeđeni tweet 8 korisnika označava da im se sviđa
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  18. proslijedio/la je Tweet
    13. sij

    Concrete ideas: 1) know patients want to be involved in access to drug issues; FDA & industry need to engage them early, for dialogue & mutual education; 2) cos need to make supply decisions VERY EARLY; hard to upscale preapproval supply; 3) engage w/payers early

    11 proslijeđenih tweetova 22 korisnika označavaju da im se sviđa
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  19. proslijedio/la je Tweet
    12. sij

    Honored to be on the list of to follow & in such good company!

    Check out our top 50 Advocates to follow for 2020 list just published in Winter, including:
    5 replies 3 proslijeđena tweeta 49 korisnika označava da im se sviđa
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  20. proslijedio/la je Tweet
    12. sij

    even though my eyes are closed here, this was quite the eye-opening talk from on her rare disease (Jansen's metaphyseal chondrodysplasia) and the essential role that patients play as advocates in advancing science, legislation, and biomedical translation to the clinic

    A wonderful group of PhD and MD students from school! A great evening of sharing the successes and challenges of moving a drug out of the lab and into the rare disease patient
    2 proslijeđena tweeta 7 korisnika označava da im se sviđa
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