RareConnect
@RareConnect
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🌐Connecting #raredisease patients globally at https://t.co/v6rTTK0X6I. 💻Website help at @RareConnectSup.
Barcelona, Catalonia
Joined June 2011
🔎 We're looking for people affected by any of these #rarediseases that would like to connect with others living with the same condition. Interested? Send us an email at info@rareconnect.org or visit: https://t.co/NvWvOKvU9Q Share this image and help us #BreakTheIsolation!
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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 👉 https://t.co/34ndqOvnVV
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Join #AuKlineSyndrome community to ask your questions and connect with other families living with Au-Kline syndrome across the world 👇 https://t.co/WuwDYfLTEt
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Share what you have learned about #SpinocerebellarAtaxiaType29 as a caregiver. Share what you have been told by doctor. Share articles you feel might be worth reading or websites worth visiting: https://t.co/2g0GxcEjDn
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Join the RareConnect #TNFReceptorAssociatedPeriodicFeverSyndrome #TRAPS community to share experiences and discover your support network! https://t.co/XIFLtSxXt1
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🔎 Do you know someone living with #AdultOnsetVitelliformMacularDystrophy
#AVMD who would like to connect with another family affected by this #raredisease? Interested? Send us an email or visit: https://t.co/NvWvOKeR7Q
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#NephroticSyndrome families are waiting for you! Share your story & connect with others worldwide in the Nephrotic Syndrome community 👉 https://t.co/zQ7LGVHYOL
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📢#KBG syndrome📢 Published patients are often children. Thus, the ADULT phenotype is ill-defined. We are collecting clinical data on adults (>18yrs) with genetically proven KBG syndrome. Reach out if you want to participate abaya@filadelfia.dk @KBGFdn @CheckOrphan #genetics
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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:
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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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: https://t.co/pR91Zl1z93
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: https://t.co/R1qvmbENDP Latest programme with session timings here: https://t.co/FqTZ3hPqw2
#r20familyconference
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Today, we are starting Newborn 👶 Screening Awareness month! Do you want to learn more? Every Thursday in September, we will share our work on Newborn Screening! #NewbornScreeningAwarenessMonth
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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: https://t.co/lrFwzGHb4g
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❓ 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! https://t.co/WboDMZz6EN
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🗣️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 https://t.co/DKuyddTTfH
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Create your team or join the GACI Global worldwide walk 👇 👉Join the #HereditaryRickets community: https://t.co/G7BbxMT5AT
Patients and families affected by GACI and ARHR2 need your support. You can help by creating or joining a team, or by making a donation. Donate/sign-up here: https://t.co/8vxiXNoiPu
#enpp1deficiency #abcc6deficiency #gaci #arhr2 #raredisease #WorldwideWalk @inozyme @sweatcoin
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🔎 Do you know someone living with #HypotoniaInfantileWithPsychomotorRetardationAndCharacteristicFacies2 #IHPRF2 in the #UNC80gene who would like to connect with another family affected by this #raredisease? Interested? Send us an email or visit: https://t.co/NvWvOKejii
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🔎 Do you know someone living with #NecrobioticXanthogranuloma who would like to connect with another family affected by this #raredisease? Interested? Send us an email at info@rareconnect.org or visit: +INFO 👉 https://t.co/NvWvOKeR7Q
#BreakTheIsolation
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@RareConnect can you help us support undiagnosed families in the UK by sharing our survey? https://t.co/iuZGR01gaX
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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: https://t.co/q7I9C8d3Fl
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If you’re a researcher, healthcare professional, patient or patient group with experience in #DrugRepurposing for #RareDiseases, get in touch with maryrose@rarebeacon.org to discuss how we can share your journey at #DrugRepo22! Learn more now! https://t.co/uSJmvmfszP
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