@RareConnect

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

 Barcelona, Catalonia
rareconnect.org
Joined June 2011
  • Tweets8.1K
  • Following4.6K
  • Followers17.6K
1.4KMedia
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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Replying to @eurordis
@eurordis @RareConnect – at Waterford, Ireland
Allan Bayat, associated professor@AllanBayat1 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 [email protected] @KBGFdn @CheckOrphan #genetics
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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: eurordis.org/eurordis-ukrain…
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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! blackpearl.eurordis.org/nomi…
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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 cutt.ly/iX6qst1
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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_official23 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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If you’re a researcher, healthcare professional, patient or patient group with experience in #DrugRepurposing for #RareDiseases, get in touch with [email protected] to discuss how we can share your journey at #DrugRepo22! Learn more now! rarebeacon.org/drug-repurpos…
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What are the competencies and resources that your patient organisation should have to plan and implement meaningful patient engagement activities? Be prepared to make patient engagement in medicines development easier for all with this online course! 👉cutt.ly/gZEriSR
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#DidYouKnow A rare #Diagnosis can impact a person's career and education? 2 in 3 #Patients and #Carers struggle to hold paid #Employment Source: Rare disease statistics based on data collected by @rarediseaseuk
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From sharing videos of a rare disease journey to raising awareness for rare conditions💪, the Black Pearl Social Media and Media Awards celebrate those who use different platforms creatively as a voice for our community. Have someone in mind? 👉blackpearl.eurordis.org/nomi…
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What should you know before participating in a cancer #ClinicalTrial? Attend the Tuesday, August 23 @power4patients webinar with @FunchainMD of @ClevelandClinic and empowered patient and #cancer survivor, Cindi, to learn more: bit.ly/3OXxOuf
Finger pointing to screen that reads, "Clinical Trial." Text next to screen reads, "Participating in a Clinical Trial: What You Need to Know." Banner on bottom reads, "Tuesday, August 23 1PM ET (10AM PT, 12PM CT)" along with Patient Empowerment Network logo.

ALT Finger pointing to screen that reads, "Clinical Trial." Text next to screen reads, "Participating in a Clinical Trial: What You Need to Know." Banner on bottom reads, "Tuesday, August 23 1PM ET (10AM PT, 12PM CT)" along with Patient Empowerment Network logo.

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Rare Connect has just established a new online community 💻 for Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL)! 👉 If you or someone you know is affected by LBSL, please refer them to this dedicated platform: cutt.ly/PZnUSzs
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The deadline to apply and become an ePAG advocate has been extended until 30 September! ✅Help pave the way for faster diagnosis and research 🔍, and capture the needs of your patient community at the European level. ✉️ : [email protected]
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Lots landmarks lighting up orange, global events, patient & medical programming & more in August. Watch this video & share for #autoinflammatory awareness! 🧡 autoinfammatorymonth.org @ChrisKinchlea @CdnANetwork @STOP_FMF @saskya_angevare youtu.be/8BMvsiMemJE #RheumTwitter
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Canada is getting lit up orange for International #Autoinflammatory Awareness Month! August 1st at 10 pm at #Niagara falls ! Thanks @NiagaraFalls & @CdnANetwork Read the thread below & at: autoinflammatorymonth.org/ev… #RheumTwitter #august4autoinflammatory #autoinflammatoryawareness
Canadian Autoinflammatory Network@CdnANetwork28 Jul 2022
Shining a light on autoinflammatory awareness in Canada and around the world! Join us as Niagara Falls is lit up in recognition and support for patients with Autoinflammatory Diseases. (1/2)
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For patient representatives, capturing the needs of your patient community 🤝and relaying this to stakeholders can often be a challenging task. 📢 Read our new guide with complementary resources, to help you listen to your patient community! 👉 l.eurordis.org/eyBY
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RareConnect retweeted
GlobalSkin@IADPO21 Jul 2022
Last Chance! GlobalSkin seeks male dermatology patients who live with #eczema, #psoriasis, #vitiligo, #acne #hs #alopecia from #Bahrain #Tunisia and #Iran to take part in our GRIDD project. Learn more: globalskin.org/research/abou… (Survey closes on July 29). #dermtwitter
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Are you interested in exploring the steps in drug development & discovering opportunities to get involved? On July 27, join NORD & a panel of experts for the webinar, “Drug Development for Rare Diseases: A Community Conversation.” Register here: bit.ly/3RnexEN
Graphic says "Upcoming Webinar: Drug Development for Rare Diseases: A Community Conversation" and has the speaker headshots and NORD logo on it.

ALT Graphic says "Upcoming Webinar: Drug Development for Rare Diseases: A Community Conversation" and has the speaker headshots and NORD logo on it.

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