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On
#WorldCancerDay
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! #eucancerplan#endnfpic.twitter.com/qPCApDw3Ee
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We're at the
@Europarl_EN for#WorldCancerDay
and inspired by President of @EU_Commission@vonderleyen 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!#EndNF#EUCancerPlan https://twitter.com/vonderleyen/status/1224699191529742337 …pic.twitter.com/u9j8NrM9IK
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Show your passion thru fashion! Wear Blue & Green on May 17! https://www.facebook.com/events/185486082826935/Wear … Green & Blue on May 22 for NF2! https://www.facebook.com/events/491944355083279/ …
#endnf#endnf2pic.twitter.com/7LJ1QDSme4
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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 https://www.ctf.org/news/childrens-tumor-foundation-announces-make-nf-visible-campaign-for-neurofibromatosis-awareness-month …
#endnfpic.twitter.com/r0ZKX5Q4DQ
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Children's Tumor Fdn proslijedio/la je Tweet
#CupidsUndieRun season starts THIS SATURDAY! Get your ticket now: https://buff.ly/35kMDR2#endnfpic.twitter.com/YwiB7yMYTT
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Children's Tumor Fdn proslijedio/la je Tweet
.
@ChildrensTumor Announces "Make NF Visible" Campaign for Neurofibromatosis Awareness Monthhttp://bit.ly/37Wd0yiHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
@ChildrensTumor 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#EndNFhttp://story.cd/AANO6OHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Children's Tumor Fdn proslijedio/la je Tweet
We're looking for someone with a passion for data curation to help us make rare disease datasets more accessible and useful to the
#endNF research community! Shoot me a DM if you'd like to learn more. RTs appreciated! https://sagebionetworks.org/careers/data-curator/ …@Sagebio#openscience#datasharingHvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Congrats to
@PLOSONE on launch of#registeredreports, 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.#EndNFhttps://twitter.com/PLOSONE/status/1222956295835095042 …
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NEW ON THE CTF BLOG: Christina (
@beingpositioned) 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 https://www.ctf.org/news/qa-world-traveler-and-nf2-hero-christina-tells-her-story …pic.twitter.com/KEeC2MgfmQ
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The most amazing community! Thank you to everyone who made this possible. We very much appreciate your support of our mission to
#endnf!https://twitter.com/southorangetown/status/1220457138281242641 …
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From scientific progress to patient care to raising awareness to sharing our NF stories, we bring the NF community together.
#thesocialchallenge#endnfpic.twitter.com/qc64qJMRjf
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Story of NF: We're committed to the fight to
#EndNF 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..." https://www.ctf.org/news/stories-of-nf-chloe-m …#nfheropic.twitter.com/LFHDP5RaVJ
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Bringing awareness,
#running, and#bourbon together to#EndNF https://www.ctf.org/news/qa-camryns-crew-bourbon-charity …#nfhero#charitypic.twitter.com/f7EntBCr1K
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Most (not all) of media panel at
#BiotechShowcase during#JPM20 agree neuroscience is next big thing, with@matthewherper of@statnews 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#EndNF.pic.twitter.com/dCkzQawKg1
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Great Media Round-up Panel at
#BiotechShowcase about the big stories this week at#JPM20, including drug pricing and approvals, and the future of biotech. Learning a lot from@AndrewE_Dunn,@rileyraygriffin,@matthewherper,@ScripMandy,@EMcCallister01 & moderator@jeff_cranmer.pic.twitter.com/tH4W1iMoCl
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The first digital NF News email just went out today! http://www.icontact-archive.com/archive?c=1619133&f=12919&s=14700&m=191418&t=c9566b66c526f7f611c743e49cec7d5606dc0e0f1ef890e63eafd2cfe0b864c1 …
#endnfpic.twitter.com/9C1JBUosti
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Congratulations to Hui Cai and the entire
@WuXi_AppTec team for the tremendous#WuXiGlobalForum at#JPM20. We learned a lot, and we’re looking forward to the WuXi forum in#Shanghai!#EndNFpic.twitter.com/UOTZVaAACm
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Interesting panel on how technology is shaping the future of healthcare at WuXi's Global Forum at
#JPM20. Learned that@AstraZeneca China is in Wuxi city in China... what a coincidence: CTF is a proud co-host of@WuXi_AppTec's#WuXiGlobalForum#EndNFpic.twitter.com/VCfOlBjsBO
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At
@WuXi_AppTec#WuxiGlobalForum at#JPM20, chat w/@melindarichter of@JNJInnovation & Hans Bishop of@GrailBio 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#EndNFpic.twitter.com/NgAWOIfBJZ
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