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alexjones Sep 14
Thank you for denying access to medication for such as You have destined me for a life on a diet that is unsustainable, leading to emotional breakdowns, making me unable to handle life, and my children have to witness it all. Today I am broken.
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Casey Upton 7h
New to twitter but I'm here for two reasons and There are several in our family with and I have I promise to to to and to get our specialists talking to your specialists.
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Mallinckrodt Sep 6
Learn more about the primary differences in symptoms of dermatomyositis and polymyositis, two types of , and what is thought to be the cause of this
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Shannon Burkoth Sep 13
Officially diagnosed w an multi-system . The difference in this new diagnostic odyssey is that I don’t feel alone! Thx to I am seeing one of the top metabolic specialists in the US! Next step is whole genome sequencing.
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Insmed 12m
Our brings to life our vision of creating a resource that reflects the experiences of those affected by . Check it out:
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Wave Life Sciences Sep 13
Last night we had the opportunity to view a selection of films from the here in Boston. Thank you to the families who shared these powerful and emotional stories. We are humbled to be a part of the community and to be in this fight with you.
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a simple life Sep 14
Mastocytosis EhlersDahnos Celiac inflammatory polyarthritis the first 3 photos are 2 yrs ago before moving from Urban modern lifestyle. The last pic is current after adopting holistic lifestyle living in former Amish home with simple lifestyle
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Taylor Kane Sep 13
Favorite this Tweet if you're attending the Summit next week! I'm presenting at the session 'Family Planning: Decisions and Considerations' from my perspective as a young carrier of a rare, genetic, terminal disease. This session is on Friday at 10:30!
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Amanda DeBellis Sep 14
Are you a patient who has been misdiagnosed w/ or someone who wants to learn more about the lasting effects of misdiagnosis? This blog post is for you.
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Runjun Dutta Sep 14
Most drugs available for rare diseases are available in West, protected with patents, and with exhorbitant prices, making impossible for Indian patients- Dr. Alok Bhattacharya, Ashoka University, presenting on 'Initiatives for R&D in
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Whitney Lavender ♿️🌺 Sep 12
It’s one of those days that I’m just trying to not cry 😢 No days off of work this week. MRIs of the brain & neck today - & yes I’m claustrophobic. The pressure from it ALL is intense this week. I’m overwhelmed.
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Amanda Rackerby Sep 10
Looking forward to attending the for the first time! My goal is to make some connections, but also get a good perspective on the issues concerning the complex and confusing world of
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SobiNAmerica Sep 12
Our VP of Legal and Compliance, Heather Golding is a co-chair for 's 2019 Compliance Congress. Heather and other experts will address the top risks for companies & compare strategies for building a compliant culture.
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💸Tommy💸 Sep 10
This is a rare photo of me in a supermarket in the poultry section.
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EB Research Partnership Sep 10
The results of EBRP-funded research can have an impact beyond far beyond EB, affecting people worldwide.
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vchang_lab Sep 13
Thanks and Atlanta for a quick but fun and informative trip! Excited to see cancer susceptibility getting so much attention these days. Now is the time for precision health, germline testing, cancer surveillance and even cancee prevention!
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Wishes for Elliott - Advancing SCN8A Research Sep 14
Holding out hope CRISPR provides more answers and hope for .
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CheckRare Sep 13
Dennis Jackman, senior vice-president of public affairs at CSL Behring, discusses his company’s rare disease orphan drug pipeline.
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Whitney Lavender ♿️🌺 4h
I FINALLY slept in this morning...like really slept in this morning!! It was glorious and so very needed. Yay!
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jayne gershkowitz Sep 14
Thanks to for organizing a thoughtful, insightful forum to address the important issues for
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