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Davidson Uplifting Athletes Apr 16
1 in 10 Americans are affected by . Help make a difference as we compete in our annual on April 25th! Pledge per bench press rep that our team averages to make every rep mean more!
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CDCN 6h
The CDCN published on the Collaborative Network Approach which describes the novel strategy we use to accelerate research and reach our goal of finding treatments for disease. We hope other will benefit from this research!
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Oak Bridge Academy Apr 16
Author/Illustrator Alaina Kane came to OBA today to share her book DOO with us. She captivated our students and we couldn’t be more proud of her. Thank you Alain’s for your inspiration today.
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CDCN 5h
Replying to @CureCastleman
Any idea can be translated into a study rather than limiting research to the ideas of researchers in grant applications. Preliminary results from the CDCN and other orgs that followed its Collaborative Network Approach suggest that this model is generalizable across
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Namitha A Kumar Apr 17
Yes. We need a registry. Most important. Please follow up on your commitment to create registries. How can we stay in the dark without knowing carrier risks? Please treat this as a public health concern.
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NORD 10h
Coming up this Monday, April 22 we're hosting a conversation w/ on relationships in . Join us to talk about bullying, optimizing time in the family & more! Join the convo using
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AMEND 13h
With patients must become their own best advocate. Come along to our Annual Patient Information Day on 11 May in Sheffield to network and learn!
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Rare Diseases India Apr 17
Replying to @rarediseasesind
“Rare Gets Care” is an interactive knowledge platform and aims to provide a discussion opportunity on for physicians of multiple specialties interested in rare diseases. Watch this space for more.
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RareConnect 16h
We're looking for people affected by any of these that would like to share their story and connect with others with the same condition. Interested? Send us an email at info@rareconnect.org or visit Share this image and SPREAD the WORD!
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Better Science Better Health 12h
Since 2000 the EU OMP Regulation encourages the development of innovative treatments for rare diseases. This video explains what rare diseases are and how the OMP Regulation helped providing access to medicines for ->
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Zeal Access 6h
Images of the day thanks to . Today's outrunners include a man with a sign over his crotch, a MMA fanatic, and a person wearing the American flag on his foot. is the key to raising awareness for :)
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Global Genes 9h
Research on can lead to better understanding & treatments for common diseases explains how studying people with a rare gene mutation that causes dense bones led to new treatment for osteoporosis. Another reason to !
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Namitha A Kumar Apr 17
Few or more, all in or whichever part of the world have 100% right to quality treatment. No government should deny us of our health human rights. Unfortunately in India we are being violated of our basic human right to treatment. Shameless governments!
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NCATS 6h
Having (or recently had) a baby in NC? Sign up now for , a program to screen babies for . researchers worked with a biotech company to develop a test for .
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Rare Diseases Congress 2019 Apr 17
PS: rarediseases(.)insightconferences(.)com Red blood cell-encapsulated enzymes: an innovative approach to overcome challenges of enzyme replacement therapies for
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Kevin Lee Apr 11
A tragic, thoughtful, beautifully written story by on the importance of glia in brain development.
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Jim Sadler Apr 17
Replying to @AKUSociety @NSPKU
Solidarity is the word! Solidarity forever. Rare disease families are small in number but massive in determination and heart.
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Spectrum Apr 17
Years, thousands of dollars, hundreds of miles: Families of children with often go through a diagnostic odyssey to get answers for their child. But their work may not end there — many are joining with scientist to drive research.
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Stephanie Fischer Apr 16
Replying to @SarahKarlin @US_FDA
Quite a difference of opinion from last week where the potential of gene therapy to treat/cure was heralded. Due diligence by is important - as is remembering the urgency for patients with fatal, progressive diseases & no other treatment options.
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Dr. Winder Gill 23h
Amazing news! is approaching, and it's so important to recognize and advocate for ! This is a great example of how research can be translated into 'real world' applications that can help our patients!
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