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#raredisease — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #raredisease, aggregated by home.social.

  1. "AI-Assisted Variant Review Across Asia: Country-Level Expert Panels, Regional Collaboration, and Global Knowledge Sharing" doi.org/10.37044/osf.io/e5g6s_

    #biohackathon #ai #MHA26 #rareDisease

    'We argue that the most useful near-term role of artificial intelligence (AI) is not autonomous variant classification, but reducing the friction between distributed evidence and distributed expert judgment. Building on collaborative platform development by participants from institutions in Japan, Singapore, the Philippines, and Thailand, we propose a common workflow connecting variant prioritization and evidence organization, structured expert review, and reviewed-knowledge sharing." index.biohackrxiv.org/2026/09/

  2. "AI-Assisted Variant Review Across Asia: Country-Level Expert Panels, Regional Collaboration, and Global Knowledge Sharing" doi.org/10.37044/osf.io/e5g6s_

    #biohackathon #ai #MHA26 #rareDisease

    'We argue that the most useful near-term role of artificial intelligence (AI) is not autonomous variant classification, but reducing the friction between distributed evidence and distributed expert judgment. Building on collaborative platform development by participants from institutions in Japan, Singapore, the Philippines, and Thailand, we propose a common workflow connecting variant prioritization and evidence organization, structured expert review, and reviewed-knowledge sharing." index.biohackrxiv.org/2026/09/

  3. "AI-Assisted Variant Review Across Asia: Country-Level Expert Panels, Regional Collaboration, and Global Knowledge Sharing" doi.org/10.37044/osf.io/e5g6s_

    #biohackathon #ai #MHA26 #rareDisease

    'We argue that the most useful near-term role of artificial intelligence (AI) is not autonomous variant classification, but reducing the friction between distributed evidence and distributed expert judgment. Building on collaborative platform development by participants from institutions in Japan, Singapore, the Philippines, and Thailand, we propose a common workflow connecting variant prioritization and evidence organization, structured expert review, and reviewed-knowledge sharing." index.biohackrxiv.org/2026/09/

  4. "AI-Assisted Variant Review Across Asia: Country-Level Expert Panels, Regional Collaboration, and Global Knowledge Sharing" doi.org/10.37044/osf.io/e5g6s_

    #biohackathon #ai #MHA26 #rareDisease

    'We argue that the most useful near-term role of artificial intelligence (AI) is not autonomous variant classification, but reducing the friction between distributed evidence and distributed expert judgment. Building on collaborative platform development by participants from institutions in Japan, Singapore, the Philippines, and Thailand, we propose a common workflow connecting variant prioritization and evidence organization, structured expert review, and reviewed-knowledge sharing." index.biohackrxiv.org/2026/09/

  5. "AI-Assisted Variant Review Across Asia: Country-Level Expert Panels, Regional Collaboration, and Global Knowledge Sharing" doi.org/10.37044/osf.io/e5g6s_

    #biohackathon #ai #MHA26 #rareDisease

    'We argue that the most useful near-term role of artificial intelligence (AI) is not autonomous variant classification, but reducing the friction between distributed evidence and distributed expert judgment. Building on collaborative platform development by participants from institutions in Japan, Singapore, the Philippines, and Thailand, we propose a common workflow connecting variant prioritization and evidence organization, structured expert review, and reviewed-knowledge sharing." index.biohackrxiv.org/2026/09/

  6. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  7. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  8. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  9. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  10. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  11. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  12. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  13. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  14. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  15. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  16. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  17. 🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Rare Patient Voice wants to hear from you — they'll pay for your time.

    👤 Who: Patients & Caregivers, ages 45-99, affected by Wet Macular Degeneration and/or Diabetic Macular Edema
    📝 What: 45-minute Web-Assisted Telephone Interview
    💵 Compensation: $125

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  18. Rubinstein-Taybi syndrome is a rare genetic condition that affects development, growth, learning, and multiple organ systems. Lifelong coordinated care can make a major difference.

    #RareDisease #Genetics #RSTS #Telehealth #MedicalEducation

  19. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  20. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  21. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  22. 🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Stargardt Disease, or caring for a loved one who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients & caregivers affected by Stargardt Disease
    📝 What: 60-minute web-assisted telephone interview
    💵 Compensation: $120

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  23. 🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Stargardt Disease, or caring for a loved one who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients & caregivers affected by Stargardt Disease
    📝 What: 60-minute web-assisted telephone interview
    💵 Compensation: $120

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  24. 🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Stargardt Disease, or caring for a loved one who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients & caregivers affected by Stargardt Disease
    📝 What: 60-minute web-assisted telephone interview
    💵 Compensation: $120

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  25. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  26. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  27. 🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
    rarepatientvoice.com/rp/DrKirk

    Living with Neurotrophic Keratitis, or know someone who is? Rare Patient Voice wants to hear from you — and they'll pay you for your time.

    👤 Who: Patients diagnosed with Neurotrophic Keratitis
    📝 What: 15-minute online survey
    💵 Compensation: $30

    Please share with anyone who may qualify. 💜

    #RarePatientVoice #RareDisease

  28. Sanofi Rare Disease Pipeline Progress Puts Recent Share Price Weakness In Focus

    Find winning stocks in any market cycle. Join 7 million investors using Simply Wall St’s investing ideas for…
    #France #FR #Europe #EU #Sanofi #neurologicalsymptoms #raredisease #safetyprofile #type3Gaucherdisease
    europesays.com/france/26627/

  29. Heading back from the annual TheRaCil meeting 🚆

    Great reports, fruitful discussions, novel ideas and an amazing evening on the Seine in Paris.

    Special thanks to Sophie and the team in Paris for two productive and very valuable days!

    #Cilia #Raredisease #ciliopathy #TheRaCil

    @cilia

  30. Annual greetings to those celebrating Easter on this day but have dietary restrictions regarding chocolate. Hope you had a good day and satisfied your sweet tooth in the way that suits you.🥚🐣 #DietaryRestriction #RareDisease #RareDiseaseCommunity #DairyFree #PKU #PKUAwareness #Mastodaoine

  31. Thrilling times! :happy:

    Following the exhilarating pre-kickoff rendezvous with #Theracil in Paris, today marked the electrifying pre-kickoff of Workpackage 2 in Cologne :koeln:

    Our marathon discussions have truly borne fruit, propelling us forward with absolute clarity!

    A huge thanks to everyone who journeyed to Cologne or powered up zoom to join us!

    Ready, set, let the journey commence!!! 🚀🎉

    #TheraCil #Ciliopathy #RareDisease #Collaboration #Science #Cilia #Sciencemastodon
    @cilia