Share4Rare (@share4rare) 's Twitter Profile
Share4Rare

@share4rare

๐Ÿ’ป๐ŸŒ Collective platform dedicated to promote research in #RareDiseases ๐Ÿš€ | Tweets en espaรฑol: @Share4Rare_es | Coordination: @IRSJD_info

ID: 928582907949715456

linkhttps://www.share4rare.org calendar_today09-11-2017 11:19:52

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Anorectal malformations (ARM) and #Hirschsprung's disease affect a portion of the #digestive system and cannot be #diagnosed before birth. ๐Ÿ—ž๏ธ Learn more about these conditions & their patient advocates ๐Ÿ‘‰share4rare.org/news/anorectalโ€ฆ #rarediseases #patientadvocavy #share4rarecommunity

Anorectal malformations (ARM) and #Hirschsprung's disease affect a portion of the #digestive system and cannot be #diagnosed before birth.

๐Ÿ—ž๏ธ Learn more about these conditions & their patient advocates ๐Ÿ‘‰share4rare.org/news/anorectalโ€ฆ
#rarediseases #patientadvocavy #share4rarecommunity
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๐Ÿ“ฃ The III #MSMDS (Multisystemic Smooth Muscle Dysfunction Syndrome) and #ACTA2 Conference will be held in Danvers (USA) on June 5- 7th, 2025. More info & registration ๐Ÿ‘‰ acta2alliance.org/events #rarediseases #raresyndromes

๐Ÿ“ฃ The III #MSMDS (Multisystemic Smooth Muscle Dysfunction Syndrome) and #ACTA2 Conference will be held in Danvers (USA) on June 5- 7th, 2025.

More info & registration ๐Ÿ‘‰ acta2alliance.org/events
#rarediseases #raresyndromes
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โ˜€๏ธ People with ๐—ซ๐—ฒ๐—ฟ๐—ผ๐—ฑ๐—ฒ๐—ฟ๐—บ๐—ฎ ๐—ฝ๐—ถ๐—ด๐—บ๐—ฒ๐—ป๐˜๐—ผ๐˜€๐˜‚๐—บ have extreme sensitivity to #ultraviolet radiation, leading to severe #skin affectations. ๐Ÿ“˜ At #Share4Rare, we created a medical book with the collaboration of ASOCIACION XERODERMA PIGMENTOSUM Espaรฑa ๐Ÿ‘‰ share4rare.org/library/xerodeโ€ฆ

โ˜€๏ธ People with ๐—ซ๐—ฒ๐—ฟ๐—ผ๐—ฑ๐—ฒ๐—ฟ๐—บ๐—ฎ ๐—ฝ๐—ถ๐—ด๐—บ๐—ฒ๐—ป๐˜๐—ผ๐˜€๐˜‚๐—บ have extreme sensitivity to #ultraviolet radiation, leading to severe #skin affectations.

๐Ÿ“˜ At #Share4Rare, we created a medical book with the collaboration of <a href="/XerodermaEspana/">ASOCIACION XERODERMA PIGMENTOSUM Espaรฑa</a> ๐Ÿ‘‰ share4rare.org/library/xerodeโ€ฆ
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๐Ÿ’ก Did you know there is a specific #EuropeanReferenceNetwork for rare ๐—ป๐—ฒ๐˜‚๐—ฟ๐—ผ๐—บ๐˜‚๐˜€๐—ฐ๐˜‚๐—น๐—ฎ๐—ฟ ๐—ฑ๐—ถ๐˜€๐—ผ๐—ฟ๐—ฑ๐—ฒ๐—ฟ๐˜€? ern euro_nmd is a network of healthcare centres that works to boost research and improve the standards of care for these pathologies ๐Ÿ‘‰ share4rare.org/news/euro-nmd-โ€ฆ

๐Ÿ’ก Did you know there is a specific #EuropeanReferenceNetwork for rare ๐—ป๐—ฒ๐˜‚๐—ฟ๐—ผ๐—บ๐˜‚๐˜€๐—ฐ๐˜‚๐—น๐—ฎ๐—ฟ ๐—ฑ๐—ถ๐˜€๐—ผ๐—ฟ๐—ฑ๐—ฒ๐—ฟ๐˜€?

<a href="/euro_nmd/">ern euro_nmd</a> is a network of healthcare centres that works to boost research and improve the standards of care for these pathologies ๐Ÿ‘‰ share4rare.org/news/euro-nmd-โ€ฆ
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๐Ÿ“ฌ Get regular updates about #Share4Rare and the latest #raredisease research! โœจ ๐Ÿ’ป News, studies, events, training, medical books, and more... Subscribe to our newsletter ๐Ÿ‘‰ share4rare.org/sign-up

๐Ÿ“ฌ Get regular updates about #Share4Rare and the latest #raredisease research! โœจ

๐Ÿ’ป News, studies, events, training, medical books, and more...

Subscribe to our newsletter ๐Ÿ‘‰ share4rare.org/sign-up
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๐Ÿ“ขWeโ€™re extending the period for submitting proposals for #collaborativeresearchstudies! ๐Ÿ’œWe encourage research on #rarediseases based on data provided by #patients โญ๏ธPatient organizations, academic entities, and scientific service companies: share4rare.org/news/new-deadlโ€ฆ

๐Ÿ“ขWeโ€™re extending the period for submitting proposals for #collaborativeresearchstudies!
๐Ÿ’œWe encourage research on #rarediseases based on data provided by #patients 
โญ๏ธPatient organizations, academic entities, and scientific service companies: share4rare.org/news/new-deadlโ€ฆ
Share4Rare (@share4rare) 's Twitter Profile Photo

๐Ÿ†• We have good news! ๐Ÿš€ If you are a #Share4Rare patient organization member and want us to implement your project in our platform, you will receive a 25% reductions of our service costs. โš ๏ธ You have until August 31st to send us your proposal. ๐Ÿ‘‰ share4rare.org/news/new-deadlโ€ฆ

๐Ÿ†• We have good news!
๐Ÿš€ If you are a #Share4Rare patient organization member and want us to implement your project in our platform, you will receive a 25% reductions of our service costs.

โš ๏ธ You have until August 31st to send us your proposal.
๐Ÿ‘‰ share4rare.org/news/new-deadlโ€ฆ