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Sanath Ramesh Nov 28
Life with a kid is tough, hard, painful, but incredibly rewarding I am thankful for Raghav for giving me and my family a chance at living every moment to our fullest 💪 Happy Thanksgiving 🦃
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Odylia Therapeutics Dec 3
Thank you for connecting with us and your support!
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GSK US Dec 2
"Accepting as part of my life has taken some getting used to, but it became easier when I learned how to manage my symptoms." Click below to read about Amelia's journey with EGPA on and her advice for others living with a .
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RareConnect Dec 3
Today is International Day of People with Disability! What happens when disability comes from a ? Certain rare diseases are often faced with ‘invisible disability'. What are the challenges posed on your way? Talk about them in your community
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SobiNAmerica Nov 26
From all of us at Sobi, we wish you and your family a Happy Thanksgiving! This year, we are thankful for the opportunity to impact lives of patients across the U.S. and Canada.
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Gemma Chandratillake Nov 28
Illustration of the fantastic AI for session at
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Rare Action Network Nov 26
Happy Thanksgiving! We want to express how incredibly grateful we are for our Network volunteers and how much we appreciate all the work they do for the community. Thank you!
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NORD Dec 3
Great news for the Ohio community!
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RareiTi, Inc. Dec 3
Listen to our Co-founder Natalie Douglas on the Show. Our team is dedicated to the mission of creating Managed Access programs that meet the needs of patient communities, bio-pharma companies, and clinicians.
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Erin Moriarty Wade Dec 1
Replying to @Primary_Immune
Right back at you! I have met so many awesome people in our tribe.
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RareDiseaseNurseNetwork Nov 28
A brilliant discussion on the emotions and experiences of getting a diagnosis. Fear, relief, panic, interest, anger... the emotions are endless and varied. But the key is to share .
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Cycle Pharmaceuticals Nov 30
We are excited to be sponsors of the Virtual Metabolic University event held in February 2021. This is an interactive, didactic program designed to provide training to US healthcare professionals.
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Katherine Wood Nov 30
A privilege to discuss my PhD work at today’s lunchtime seminar series with and - very proud of the work we have done on research and looking forward to what the future holds at Harvard in the new year
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Healx Nov 28
It's ! Join our Head of NF Partnerships (11:15 GMT) for what's set to be a fascinating discussion on in accelerating research and drug development. Our team will also be on hand - and on stand - during the day to answer your questions. Get in touch!
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Eastern AHSN Nov 28
Today we are at to launch our survey with to understand what it is like to live with a and the challenges faced. We will use your insight to work with the healthcare innovation community to develop solutions.
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Princess, The Tower Dec 2
“I overdo things—a fine line exists between the freedom of and the reality that I could send myself into a downward spiral that could last days, weeks or months… I overwork…have to stop…this triggers a boatload of emotions.”
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Cure VCP Disease Dec 2
Tonight is our first Care Partner Happy Hour. No VCP patients, only those loved ones that care for VCP patients. Registration is required at:
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Marie-Louise Frémond 6h
Our little paper describing a novel COPA mutation associated with RF+ polyarticular JIA is out ! 👉 👉COPA syndrome and SAVI should be considered in early-onset RF+ pJIA
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Princess, The Tower Nov 30
“The person living with or may not look “sick” at all, but inside, every moment of every day may be a challenge… They fight an uphill battle to be heard, and sometimes, to receive proper treatment.”
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Gay Grossman Dec 1
Be a part of our success as we work toward a treatment.
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