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Jerkmate
https://swoop.com/solutions/communities/
Rare Disease Patient Communities for Pharma | Swoop
Apr 22, 2026 - Engage patients in 70+ real rare disease and chronic condition communities. MyHealthTeam delivers zero-party patient data and authentic patient connection for...
rare diseasepatient communitiespharmaswoop
https://celiac.org/icureceliac/for-researchers/about-icureceliac-the-celiac-disease-patient-powered-research-network/
About iCureCeliac®: the Celiac Disease Patient Registry | Celiac Disease Foundation
celiac diseasepatient registryfoundation
https://my.clevelandclinic.org/patient-stories/969-barbaras-journey-with-dbs
Parkinson’s Disease Patient Story: Barbara Smith’s Journey with Deep Brain Stimulation (DBS) |...
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https://www.massgeneralbrigham.org/en/about/newsroom/press-releases/ai-detects-hidden-heart-disease
AI Detects Hidden Heart Disease Using Existing Scans Stored in Patient Records | Mass General...
Researchers from Mass General Brigham and the United States Department of Veterans Affairs (VA) have developed a deep learning algorithm that detects coronary...
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https://www.broadinstitute.org/publications/broad1364001
Patient-Specific In Vivo Gene Editing to Treat a Rare Genetic Disease. | Broad Institute
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https://www.eoecare.com/resources
Patient Resources for Eosinophilic Esophagitis (EoE) Disease
Helpful resources to support your journey with Eosinophilic Esophagitis (EoE) including FAQs, doctor discussion guides, glossary of common terms and more.
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https://www.isscr.org/upcoming-programs/parkinsons-webinar
Stem Cells and Parkinson’s Disease: Research Advances + Patient Experiences — International Society...
An ISSCR Digital Webinar in partnership with the World Parkinson Coalition 21 October 2024
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https://swoop.com/blog/trailblazing-in-rare-disease-patient-engagement-5-lessons-from-pharmas-new-playbook/
The Rare Disease Marketing Guide: 5 Strategies Every Pharma Marketer Needs To Know for Patient...
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https://brainfoundation.org.au/research-grants/2014/neurodegenerative-diseases/
Modelling Alzheimer's disease in patient-derived neurons
Feb 23, 2022 - PROJECT SUMMARY: Alzheimer’s disease is the most common form of dementia and its prevalence in Australia is increasing at a rapid rate. By 2050, Alzheimer’s...
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https://iclr.cc/virtual/2026/poster/10008459
ICLR Poster Learning Patient-Specific Disease Dynamics With Latent Flow Matching For Longitudinal...
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https://www.podbean.com/media/share/pb-cr8si-188a432?download=1
Wait, How Do You Spell That? A Rare Disease Podcast - Navigating the Patient's Journey featuring...
Patient Worthy is humbled to speak to Brenda Snow, CEO and Founder of Snow Companies and now the bestselling author of 'Diagnosed: The Essential Guide to...
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https://peterattiamd.com/roneshsinha/
#69 - Ronesh Sinha, M.D.: Insights into the manifestation of metabolic disease in a patient...
Jan 28, 2025 - “The way we raise our kids early on might actually set a pattern for how much of an accelerated life, or how much of a stressed out nervous system they might...
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https://aapos.org/patient/patient-resources/genetic-info-patients
Patient Resources- Genetic Eye Disease - American Association for Pediatric Ophthalmology and...
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https://swoop.com/blog/the-future-of-rare-disease-marketing-is-patient-first-and-privacy-safe/
The Future of Rare Disease Marketing is Patient-First and Privacy-Safe - Swoop
Apr 29, 2026 - Swoop helps brands find, engage, and support rare disease patients earlier through privacy-safe, data-driven solutions.
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https://www.neophore.com/
NeoPhore | Broadening cancer patient access to powerful disease-transforming immunotherapy
Therapeutic approach transiently blocks DNA MMR to mimic known robust and durable clinical responses to immunotherapy of patients with genetically...
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https://www.mmitnetwork.com/case-study-download-smoothing-patient-access-rare-disease/
Case Study Download: Smoothing Patient Access in Rare Disease | MMIT
Aug 12, 2025 - MMIT’s payer policy data and market insights helped one biopharma company improve coverage for its rare disease therapy.
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https://waithowdoyouspellthatraredisease.podbean.com/
Wait, How Do You Spell That? A Rare Disease Podcast | Patient Worthy
Wait How Do You Spell That? is a rare disease podcast produced by Patient Worthy. We talk about issues affecting people rare and underdiagnosed conditions and...
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https://galen-research.com/
Leading experts in developing and evaluating disease-specific patient reported outcome measures |...
Galen Research is the leading expert in developing and evaluating disease-specific patient reported outcome measures
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https://www.eacts.org/education/eacts-academy/events/26aorticweb2/
Aortic Webinar 2: Heritable Thoracic Aortic Disease: From unmet needs to patient-centred care -...
Apr 23, 2026 - The second of the Aortic Disease Domain webinars of 2026 will be run by our Heritable Thoracic Aortic Disease Task Force.
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https://padapawn.com/fakehospital-patient-believes-she-has-a-viral-disease/
FakeHospital Patient believes she has a viral disease
FakeHospital Patient believes she has a viral disease
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https://www.hopkinsmyositis.org/
Johns Hopkins Myositis Center | Disease Education, Patient Care and Research for Myositis
The Johns Hopkins Myositis Center brings together the expertise of multiple specialties in the treatment of those with Myositis.
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https://swoop.com/blog/patient-reported-impact-of-inflammatory-bowel-disease/
Patient Reported Impact of Inflammatory Bowel Disease - Swoop
Apr 18, 2025 - Background People with Crohn’s Disease (CD) or Ulcerative Colitis (UC) often struggle not only with the physical aspects of IBD, but also the mental health,...
inflammatory bowel diseasepatient reportedimpactswoop
https://www.lymedisease.org/members/lyme-times/2025-summer-features/mylymedata-10th-anniversary/
Celebrating 10 Years of MyLymeData: A Patient-Driven Revolution in Lyme Disease Research -...
Jun 3, 2025 - Registry amplifies patient voices and empowers them to drive progress in the fight against tick-borne illness.
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https://www.pharmavoice.com/news/patient-advocacy-drug-pharma-diversity-sarcoidosis-fsr-clinical/750860/
How a patient group tackled research diversity for one disease and triggered change for pharma |...
A policy win by the Foundation for Sarcoidosis Research has built momentum for other shifts that could bolster diversity in clinical trials.
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https://weillcornell.org/movement
Parkinson's Disease & Movement Disorders Institute | Patient Care
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https://stanfordhealthcare.org/for-patients-visitors/patient-advisory-councils-1/adult-cogenital-heart-program-pac.html
Patient & Family Partner Program: Adult Congenital Heart Disease | Stanford Health Care
Learn how Stanford Health Care brings together leading-edge technology, innovative research, and world-renowned experts to meet your unique needs.
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https://diagnostics.roche.com/global/en/healthcare-transformers/article/early-disease-detection-ai.html
Impacting patient care through early disease detection with AI
Traditional healthcare focuses on treatment after symptoms appear, but early disease detection with AI can prevent many chronic conditions.
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https://cidni.org/for-patients/
Patient Care Baltimore MD | CIDNI | Infectious Disease
Oct 10, 2025 - CIDNI provides not only education, but patient care in Baltimore MD. We provide care for people with infectious diseases. Call us!
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https://docgo.com/for-partners/remote-patient-monitoring-chronic-disease-management/
REMOTE PATIENT MONITORING & CHRONIC DISEASE MANAGEMENT - FOR PARTNERS - DocGo
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