Children's Tumor Fdn

@ChildrensTumor

The Children's Tumor Foundation is a non-profit dedicated to ending neurofibromatosis (NF) through research.

United States
Vrijeme pridruživanja: travanj 2009.

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  1. 4. velj

    On we're announcing no one should suffer from MPNST! NF patients are twice as likely to develop cancer than general public. We can prevent this with better diagnosis, better research, better treatments. Lots in common, let's do this together!

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  2. 4. velj

    We're at the for and inspired by President of saying everyone needs to share data. At CTF we've built an NF data infrastructure relevant to cancer too. It's open and available to all researchers!

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  3. 4. velj
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  4. 4. velj

    Thrilled to announce this year's NF Awareness Month campaign: MAKE NF VISIBLE! Focus on external things the community is doing to raise the profile of this rare disease + internal struggle patients experience

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  5. proslijedio/la je Tweet

    season starts THIS SATURDAY! Get your ticket now:

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  6. proslijedio/la je Tweet
    4. velj

    . Announces "Make NF Visible" Campaign for Neurofibromatosis Awareness Month

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  7. 4. velj

    Announces “Make NF Visible” Campaign for Neurofibromatosis Awareness Month; focus on elevating awareness + funding for rare genetic disorder that affects 2.5 million people worldwide and has no cure

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  8. proslijedio/la je Tweet
    30. sij

    We're looking for someone with a passion for data curation to help us make rare disease datasets more accessible and useful to the research community! Shoot me a DM if you'd like to learn more. RTs appreciated!

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  9. 3. velj

    Congrats to on launch of , an innovative path to openly & quickly sharing scientific info. We're proud to have piloted this with our DDIRR initiative. We believe all valid research should be made public so that cures get to patients ASAP.

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  10. 27. sij

    NEW ON THE CTF BLOG: Christina () was planning her wedding and a big move when her life was turned upside down. Leaning on her faith, her new husband, and their love of travel, she shares what her journey with NF2 has been like

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  11. 24. sij

    The most amazing community! Thank you to everyone who made this possible. We very much appreciate your support of our mission to !

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  12. 24. sij

    From scientific progress to patient care to raising awareness to sharing our NF stories, we bring the NF community together.

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  13. 23. sij

    Story of NF: We're committed to the fight to for people like Chloe, who doesn't let having NF keep her from the things she loves the most, "Chloe loves to dance, tumble, and cheer. She loves to be around people, has a very kind heart..."

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  14. 21. sij
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  15. 16. sij

    Most (not all) of media panel at during agree neuroscience is next big thing, with of saying problem is there aren't yet hard biomarkers for many diseases. Agreed! We're furiously working on this so that we can more quickly .

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  16. 16. sij

    Great Media Round-up Panel at about the big stories this week at , including drug pricing and approvals, and the future of biotech. Learning a lot from , , , , & moderator .

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  17. 15. sij
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  18. 15. sij

    Congratulations to Hui Cai and the entire team for the tremendous at . We learned a lot, and we’re looking forward to the WuXi forum in !

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  19. 15. sij

    Interesting panel on how technology is shaping the future of healthcare at WuXi's Global Forum at . Learned that China is in Wuxi city in China... what a coincidence: CTF is a proud co-host of 's

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  20. 15. sij

    At at , chat w/ of & Hans Bishop of reminds that we fail a lot in R&D and to focus on hard problems to make a big difference. We have hard problems in NF! Look forward to welcoming Grail to help

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