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Yoni Maisel Aug 6
. "Bubble-babies" and beyond... - The path to genetic cures for the now over 4⃣3⃣0⃣ documented disorders
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Whitney Lavender ♿️🦿🌺 10h
I do my very best, but I’m not perfect, & I have moments the positive attitude is hard to keep up with. Wading through some deep waters at the moment. This life is not easy...especially when living with & Just trying to keep it real.
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Yoni Maisel 18h
. in action for a rare dermato-immunological disorder ...a genomic discovery, a targeted Rx, and an after picture worth a thousand words
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Yoni Maisel Aug 7
. Pandemic-era, non-COVID-19 immunological research and discovery roll on... ...as the newest disorder enters medical literature
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Princess, The Tower Aug 8
“When health challenges turn your life upside down and you can no longer do the things you once enjoyed, you lose a piece of yourself…it’s like our identity has been stolen and we no longer know who we are. We grieve the person we once were.”
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Evan Campa Aug 7
One of my favorite pictures of us. I had just gotten diagnosis a month prior and we were in Montana for my sister-in-law’s wedding. It perfectly captures our life - things are a mess and not as expected but we are having a grand time anyways!
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Ataxia and Me CIO 1184030 Aug 8
With 1 sleep to go, the at are setting up for Don't forget to use in your posts
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Metabolic Support UK 4h
Only 1 day until we release some exciting news!
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Princess, The Tower 16h
“One of the biggest problems with flare ups is the fact that you don’t know how long they will last. This very fact can cause……frustration…and isolation. flare-ups can last hours, days, weeks or even months.”
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Xperiome Aug 4
Meet Xperiome the patient-powered knowledge base designed to help pharma companies deliver new therapies faster and smarter. Learn more about Xperiome here:
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Myositis Support and Understanding (MSU) 22h
Bitsy, living with inclusion body myositis (IBM), has been adapting to lost independence, a challenge with this rare degenerative muscle disease. Enter Maya, an English Labrador retriever and Bitsy’s service dog! 🐾
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Marni Cartelli 23h
I'm going to stop going to bed because everytime I do pushes back my restoration date. Wonder if they will pay for my emergency treatment for my since I'm now having a full flare?! Shame on them!
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Bridge the Gap - SYNGAP Education & Research Fnd 2h
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pharmavoice Aug 7
. co-founder Natalie Douglas has spent her career forging new ground in the industry, and she plans to do the same at the managed access and medicines management group. 2020 #PharmaVOICE100#HBAimpact
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Ataxia and Me CIO 1184030 Aug 8
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UK HSP Support Group 3h
Coming up Tuesday at 13:30 (BST) will be presenting about rehabilitation and physical activity in , via Zoom. All are welcome!
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My Way Access 1h
Funday Sunday Who would win in epic battle? The Hulk, The Rock or Aquaman? You decide or can My Way Access Dermot take them all on?
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pharmavoice Aug 6
In just the past 4 years, 2020 Guadalupe Hayes-Mota, Director, Global Supply Chain & Manufacturing Pharma helped the company provide 12 innovative drugs to patients-some of them in - in more than 80 countries.
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Take Roots Consulting 🌱 Aug 7
Two years ago, I had the privilege to be on Parliament Hill with , Sharon Proctor & to speak with Members of Parliament about the need for more support & research for in 🇨🇦 I’m unbelievably proud to continue my work with
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RDMD Aug 7
A5: We are honored to share the stories of patients, parents and other care partners on our blog to help increase understanding of issues such as the “feelings of isolation and frustration” that may accompany symptoms of .
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