RareConnect

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RareConnect

RareConnect

@RareConnect

🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.

Barcelona, Catalonia Katılım Haziran 2011
4.7K Takip Edilen17.8K Takipçiler
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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
Newborn screening can detect rare diseases in asymptomatic newborns, allowing for the possibility of early treatment. This results in better long-term outcomes for people living with rare conditions. Read more 👉eurordis.org/our-priorities…
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RareConnect
RareConnect@RareConnect·
September is #pulmonaryfibrosis awareness month! Join #PFMonth and their mission to support #pulmonaryfibrosis patients all over the world in their fight for better access to treatment and support!👇 ➡️Meet others in the PF community: rareconnect.org/en/community/i…
EU-PFF@EU_IPFF

These are the 7 common types of #PF: - Idiopathic Pulmonary Fibrosis - Non-Specific Interstitial Pneumonia - Chronic Hypersensitivity Pneumonitis - Rheumatoid Arthritis ILD - Scleroderma ILD - Fibrotic sarcoidosis - Unclassifiable ILD #PFMonth #pulmonaryfibrosis #BreathingLife

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RareConnect
RareConnect@RareConnect·
Register for the upcoming Ring20 Families Conference to hear about the latest on research, treatments, and patient stories. A unique chance to meet other r(20) families. 👇 ➡️ Connect with others globally in the Ring Chromosome 20 Syndrome community: rareconnect.org/en/community/r…
Ring20UK@Ring20UK

Our Ring20 Families Conference 2022 has gone HYBRID! We have lots of information to share with our focus on new research opportunities for r(20) syndrome. REGISTER: qrco.de/ring20fc22 Latest programme with session timings here: #FC22program" target="_blank" rel="nofollow noopener">ring20researchsupport.co.uk/for-families/f… #r20familyconference

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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
More than 650 Ukrainian families living with a rare disease benefited from various kinds of support thanks to a series of emergency grants distributed to Ukrainian, Polish and Romanian patient organisations throughout March-April 2022. 👉 Learn more: eurordis.org/eurordis-ukrai…
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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
❓ Could you be our next awardee? The EURORDIS Leadership Award celebrates individuals whose outstanding advocacy work 💪 has benefited the rare disease community by educating stakeholders or by affecting legislation. ✅ Submit a nomination now! blackpearl.eurordis.org/nominate/
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EURORDIS-Rare Diseases Europe
EURORDIS-Rare Diseases Europe@eurordis·
🗣️How can the EU foster coordination on and solidarity for #rarediseases? @EU_EESC will hold a public hearing to gather input on "Ensuring strong European solidarity for rare disease patients". 🗓️Tomorrow 🕘9:30 am CET Register and listen here cutt.ly/iX6qst1
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APARDO
APARDO@APARDO_official·
We invite everyone to our online event where we discuss and learn more about Gene Therapy with our guest speaker Dr. Saumya Jamuar 📅 October 3, 2022 - 9:00AM SGT 📍 Online Event via Zoom Register Now Here: us02web.zoom.us/meeting/regist…
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Keşfet

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