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  1. prije 9 sati
    Odgovor korisnicima

    We agree. We have a Health and Wellness Counselor as part of our team to help patients and caregivers cope at all stages of their cancer journey. Learn more:

  2. prije 9 sati
  3. prije 11 sati

    We've enjoyed connecting and educating this week during . Thanks to all in-person and livestream attendees!

  4. prije 11 sati
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  5. prije 12 sati

    “I don’t think there is a rare disease patient on the planet who doesn’t harbor some hurt deep in their soul about how friendships change after a diagnosis.”

  6. 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.”

  7. prije 19 sati

    With 2020 coming up, we take the opportunity to express our thanks and gratitude to patients, their families, caregivers and the entire community for their continued support.

  8. 4. velj

    Diagnosing diseases can be extremely challenging for patients and their care teams. Here we look at 3 major benefits of an accurate and timely :

  9. 4. velj

    Our Founder/CEO, Maria Picone will be teaming up with our Citizen Scientist Award Winner, Lara Pullen to speak at today! Register for the live stream at the link below.

  10. 4. velj

    Brilliant! “All of the [funded] groups will be required to convene an international scientific conference to bring together patients, researchers, and clinicians...”

  11. How do and should patients get medical care? How does their intellectual disability get in the way of getting the best possible care? What can we do as a community to improve this?

  12. 3. velj

    We're ready to introduce you to another MGA Triple Crown Showdown Race Ambassador! Meet Verné Coby!

  13. 3. velj

    Kicking off day one of our sessions! We're excited to connect and learn together this week.

  14. 3. velj

    February is here and that means it's not long until on the 29th! Have a read of our latest blog to find out why and how we're getting involved:

  15. 3. velj

    Valentine's Day baking is under way!!! LMK if you want cookies! We are still taking requests. Helping kids with rare diseases has never been so sweet 😉 ❤🍪❤🍪

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  16. 3. velj

    Anyone else want a cane like the one used in her show? Can you guys imagine walking into our conferences, or better yet, meetings with members of Congress with that? It just screams Bet they would pay attention then

  17. 2. velj

    Tomorrow is the start of our final seminar. Join us to hear from experts at You can access our previous sessions and download our workbooks on our website.

  18. 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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