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RareConnect @RareConnect

🌐Connecting #raredisease patients globally at rareconnect.org. 💻Website help at @RareConnectSup.

Joined June 2011
  • Tweets 8,141
  • Following 4,638
  • Followers 17,706
1,423 Photos and videos
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RareConnect@RareConnect
1 Sep 2022
🔎 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: rareconnect.org/en/community… Share this image and help us #BreakTheIsolation!
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RareConnect retweeted
EURORDIS-Rare Diseases Europe@eurordis
22 Sep 2022
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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Join #AuKlineSyndrome community to ask your questions and connect with other families living with Au-Kline syndrome across the world 👇 rareconnect.org/en/community…
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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: rareconnect.org/en/community…
Join the RareConnect #TNFReceptorAssociatedPeriodicFeverSyndrome #TRAPS community to share experiences and discover your support network! rareconnect.org/en/community…
🔎 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: rareconnect.org/en/community…
#NephroticSyndrome families are waiting for you! Share your story & connect with others worldwide in the Nephrotic Syndrome community 👉rareconnect.org/en/community…
RareConnect retweeted
22Q11 Ireland@22Q11_Ireland
2 Sep 2022
Replying to @eurordis
@eurordis @RareConnect
Allan Bayat, associated professor@AllanBayat
1 Sep 2022
📢#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: rareconnect.org/en/community…

EU-PFF@EU_IPFF
3 Sep 2022
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: rareconnect.org/en/community…

Ring20UK@Ring20UK
3 Sep 2022
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: ring20researchsupport.co.uk/… #r20familyconference
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RareConnect retweeted
EURORDIS-Rare Diseases Europe@eurordis
1 Sep 2022
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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RareConnect retweeted
EURORDIS-Rare Diseases Europe@eurordis
31 Aug 2022
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-ukrain…
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RareConnect retweeted
EURORDIS-Rare Diseases Europe@eurordis
29 Aug 2022
❓ 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/nomi…
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RareConnect retweeted
EURORDIS-Rare Diseases Europe@eurordis
31 Aug 2022
🗣️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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Create your team or join the GACI Global worldwide walk 👇 👉Join the #HereditaryRickets community: rareconnect.org/en/community…

Brighter Hope Foundation@thebrighterhope
30 Aug 2022
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: gaciglobal.org/gaci-global-w… #enpp1deficiency #abcc6deficiency #gaci #arhr2 #raredisease #WorldwideWalk @inozyme @sweatcoin
🔎 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: rareconnect.org/en/community…
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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 👉 rareconnect.org/en/community… #BreakTheIsolation
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RareConnect retweeted
SWAN UK (syndromes without a name)@SWAN_UK
25 Aug 2022
Replying to @RareConnect
@RareConnect can you help us support undiagnosed families in the UK by sharing our survey? ow.ly/MrQ150Kr342
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RareConnect retweeted
APARDO@APARDO_official
23 Aug 2022
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/regi…
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RareConnect retweeted
Beacon for Rare Diseases@RareBeacon
22 Aug 2022
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! rarebeacon.org/drug-repurpos…
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