#raredisease — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #raredisease, aggregated by home.social.
-
Bipartisan congressional panel warns the US is losing its global lead on rare disease cures
-
Bipartisan congressional panel warns the US is losing its global lead on rare disease cures
-
The following hashtags are trending across South African Mastodon instances:
#Wordle
#wordle1871
#crosswords
#puzzles
#clovessyndromeawarenessday
#raredisease
#clovessyndrome
#church
#volunteers
#pollsBased on recent posts made by non-automated accounts. Posts with more boosts, favourites, and replies are weighted higher.
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Wet Macular Degeneration and/or Diabetic Macular Edema | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkRare 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: $125Please share with anyone who may qualify. 💜
-
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.
-
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.
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
Pipeline release! nf-core/raredisease v3.1.2 - 3.1.2 - Princess Peach (patch)!
Call and score variants from WGS/WES of rare disease patients.
Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/3.1.2#diagnostics #raredisease #snv #structuralvariants #variantannotation #variantcalling #wes #wgs #nfcore #openscience #nextflow #bioinformatics
-
Pipeline release! nf-core/raredisease v3.1.2 - 3.1.2 - Princess Peach (patch)!
Call and score variants from WGS/WES of rare disease patients.
Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/3.1.2#diagnostics #raredisease #snv #structuralvariants #variantannotation #variantcalling #wes #wgs #nfcore #openscience #nextflow #bioinformatics
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Neurotrophic Keratitis | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $30Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
🔬 Paid Research Opportunity: Stargardt Disease | By Dr. Kirk Adams | Courtesy of the PWD Media Co-op
https://rarepatientvoice.com/rp/DrKirkLiving 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: $120Please share with anyone who may qualify. 💜
-
🧬 #GeneTherapies are revolutionary treatments for diseases that previously had no cure. But regulatory systems were not developed with gene therapies in mind, and adaptation is required to facilitate the assessment of gene therapies.
💡 ARDAT developed evidence to support the regulatory assessment of ATMPs, helping launch a clinical trial for a gene therapy for a #RareDisease
👉 Read the full story here: https://link.europa.eu/cgmm6P -
Pipeline release! nf-core/raredisease v3.1.1 - 3.1.1 - Princess Peach (patch)!
Call and score variants from WGS/WES of rare disease patients.
Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/3.1.1#diagnostics #raredisease #snv #structuralvariants #variantannotation #variantcalling #wes #wgs #nfcore #openscience #nextflow #bioinformatics
-
Two people with neuromyelitis optica — the immune system at war with the spinal cord and optic nerve — have stayed in remission over 15 years after a single stem-cell transplant. He got cells from his sister and went on to raise two children. She got cells from a stranger and no longer needs medication.
#Science #StemCells #MedicalResearch #Autoimmune #NMOSD #RareDisease #PublicResearch #Immunology #Health #ScienceNews #Research #GoodNews
-
🩸 Today is World Sickle Cell Day.
Let's raise awareness about Sickle Cell Disease and support efforts toward early diagnosis, improved treatment, and better patient outcomes.
Clinical research continues to drive innovation and hope for millions worldwide.
#WorldSickleCellDay #SickleCellDisease #ClinicalResearch #RareDisease #Healthcare #GenelifeClinicalResearch -
Pipeline release! nf-core/raredisease v3.1.0 - 3.1.0 - Princess Peach!
Call and score variants from WGS/WES of rare disease patients.
Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/3.1.0#diagnostics #raredisease #snv #structuralvariants #variantannotation #variantcalling #wes #wgs #nfcore #openscience #nextflow #bioinformatics
-
🚨🧠 BREAKING NEWS: Someone on the internet was diagnosed with a rare brain inflammation! Here's a blog post for your perusal, sprinkled with personal anecdotes that are essential to your coding projects, because who doesn't need a side of medical drama with their GitHub repository? 😂 #EssentialReading #TotallyRelevant
https://burntsushi.net/encephalitis/ #BreakingNews #BrainHealth #RareDisease #CodingHumor #MedicalDrama #HackerNews #ngated -
Soligenix advances HyBryte, a visible light photodynamic therapy for rare cutaneous T-cell lymphoma, with Phase 3 interim results expected early 2026. Novel approach offers faster response and favorable safety profile. #RareDisease #Biotech
-
Soligenix receives UK Promising Innovative Medicine designation for SGX945 (dusquetide) in Behçet's disease treatment, advancing its rare disease pipeline. #RareDisease #Biotech
-
Soligenix receives European Commission orphan drug designation for SGX945 in Behçet's disease treatment, validating the company's rare disease pipeline strategy. #Biotech #RareDisease
-
Pipeline release! nf-core/raredisease v3.0.0 - 3.0.0 - Mario!
Call and score variants from WGS/WES of rare disease patients.
Please see the changelog: https://github.com/nf-core/raredisease/releases/tag/3.0.0#diagnostics #raredisease #snv #structuralvariants #variantannotation #variantcalling #wes #wgs #nfcore #openscience #nextflow #bioinformatics
-
Liebe Mitmenschen.
Nur noch bis Ende 11.05.2026! #icd11jetzt - Schnellere & bessere Hilfe für Kranke. Bitte zeichnet!
JEDE Stimme hilft!
#Lyme #mecfs #LongCovid #lgbtq+ #ChronicPain #RareDisease und viele mehr!Petitions-Link:
https://epetitionen.bundestag.de/content/petitionen/_2025/_09/_16/Petition_186702.html
. -
Nur noch bis Ende 11.05.2026! #icd11jetzt - Schnellere & bessere Hilfe für Kranke. Bitte zeichnet!
JEDE Stimme hilft! #Lyme #mecfs #LongCovid #lgbtq+ #ChronicPain #RareDisease und viele mehr! Petitions-Link:
https://epetitionen.bundestag.de/content/petitionen/_2025/_09/_16/Petition_186702.html
. -
Fatal Familial Insomnia is a rare inherited prion disease that progressively destroys the brain’s ability to regulate sleep and autonomic function. Research is now exploring gene-targeted therapies.
#FatalFamilialInsomnia #RareDisease #PrionDisease #Neurology #Telehealth
-
Medical Denial Compounds Rare Condition Struggles
Megan Hetherington, 27, denied heart valve surgery due to antiphospholipid syndrome. Doctors advise living each day as her last.
#RareDisease, #HeartSurgery, #AntiphospholipidSyndrome, #MedicalDenial, #UKHealth
https://newsletter.tf/woman-denied-heart-surgery-rare-clotting-syndrome/
-
A 27-year-old woman has been denied a life-saving heart surgery, a situation doctors say means she should 'live every day like it's her last'. This is a stark warning for patients with rare conditions.
#RareDisease, #HeartSurgery, #AntiphospholipidSyndrome, #MedicalDenial, #UKHealth
https://newsletter.tf/woman-denied-heart-surgery-rare-clotting-syndrome/