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NIHBrainTumor 9 h
Odgovor korisniku/ci @drnitgarg @laureline_be
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:
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IDFA 9 h
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Global Genes 11 h
We've enjoyed connecting and educating this week during . Thanks to all in-person and livestream attendees!
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Dawn DeBois 12 h
“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.”
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Stephanie Fischer 15 h
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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Santhera 19 h
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.
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Repeat Diagnostics 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 :
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TREND Community 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.
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KT Pickard 4. velj
Brilliant! “All of the [funded] groups will be required to convene an international scientific conference to bring together patients, researchers, and clinicians...”
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SynGap Research Fund - 501(c)(3) 3. velj
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?
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SynGap Research Fund - 501(c)(3) 3. velj
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Global Genes 3. velj
Kicking off day one of our sessions! We're excited to connect and learn together this week.
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Repeat Diagnostics 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:
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Cookies4Cures 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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Marni Cartelli 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
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Stephanie Fischer 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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Barby Ingle 1. velj
Odgovor korisniku/ci @duffynyc
I love... YOU, hope, music, cheer, dance and freedom. But most of all I love humanity.
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Tom Weiser 1. velj
🦓 There are 7,000 different kinds of Just over 80% of rare diseases have less than 6,000 patients Do you
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Global Genes 31. sij
“Until today, there were no treatment options specifically for patients with epithelioid sarcoma... The approval of Tazverik provides a treatment option that specifically targets this disease.”
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IDFA 31. sij
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