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Yoni Maisel Aug 14
Genomics, and (fruit-fly) research, brings a new human genetic disorder to medical literature -News: -Journal:
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Maggie Takacs Dentremont 13h
We had a wonderful meeting, yesterday with Patrick McHenry's assistant, Regional Director, Roger Kumpf, at Representative Patrick McHenry's office for ! Thank you for your support of the community!
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Rare Revolution Mag 32m
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RareConnect 2h
support groups become a fundamental reference point with which to share the pains as well as the successes related to the caregiving of a child with a rare disease.
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a simple life Aug 19
After days of fasting I'm eating comfort food & washing all bedding after detox baths & healing & calming mast cells down I am starting to feel better 1st pic is today, The other pics are over the last couple days sick w/flare masto, candida, edema
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Alaa Aug 15
Boston friends (and Twitter followers who are not my friends), Get your tickets to the Rare Disease Film Festival. A unique opportunity to bring together patients, patient advocates, and the biopharma community
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Insmed Aug 16
Our work would not be possible without patient involvement. The community is our biggest inspiration and motivates us every day to think bigger and create better solutions.
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Stellenangebote 21h
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Zeal Access 12h
Great scholarly article by and about one of Canada's more bizarre laws and how it can impact the community. A must read.
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CHI Aug 20
HI dad and creative writing professor, Richard Sonnenmoser, is the author of this captivating article on his son's diagnosic odyssey. Read his story here: Meet him at our CHI Family Conference:
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Yoni Maisel Aug 13
ICYMI - "AFM," a rare polio-like, paralyzing illness has been one of the biggest medical mysteries of this decade. -Today, a likely culprit identified -
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Michelle Aug 16
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NICHQ Aug 20
Children living with a rare disease face many complex challenges. Here, NICHQ CEO Scott D. Berns shares how families, organizations and stakeholders can help children born with a reach their optimal health.
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GenPath WomensHealth 24h
Maintaining function of torso, arm, leg, and neck muscles enables people with SMA to achieve their highest level of function and independence.
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Bioevents - Sharing Biomed Knowledge Aug 19
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Susan Bell Aug 14
Noah is teaching about Hunter Syndrome himself 💜
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Zoe's Story 23h
Hello warriors, family and friends!! Our writing prompt for this week is... 🎯 What I want my words to say to you . . . Keep journaling! 🙂
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Seth Rotberg Aug 20
Excited to help bring the first young adult meet up to DC. If you or someone you know is interested in attending, make sure to register at the link below.
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Rare Disease UK Aug 19
Last month a photography student at spent two weeks with us taking photos of patients. Thank you to all those who took part and volunteered to have their portrait taken!
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Share4Rare Aug 19
In Share4Rare you can filter questions related to a topic of your interest and receive relevant and personalized information ➡️ Not registered yet? 👥
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