https://edition.cnn.com/2025/04/17/entertainment/eddie-vedder-matter-of-time-documentary
Eddie Vedder’s quest to help cure a rare disease subject of new documentary | CNN
Apr 18, 2025 - “Matter of Time,” a documentary featuring legendary rocker Eddie Vedder premiering this fall at the Tribeca Film Festival, is being billed as much more than a...
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https://www.rarediseaseday.org/
Rare Disease Day 2026
Oct 27, 2025 - Raising awareness for patients, families and carers around the world that are affected by rare diseases.
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https://www.apardo.org/
Rare Disease | Apardo | Singapore
Asia Pacific Alliance of Rare Disease Organisations, non-profit organization, patient advocacy, provide support on skills development, share information and...
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https://www.healthing.ca/rare-diseases/opinion-a-better-future-for-1-in-12-canadians-starts-with-rare-disease-reform
Opinion: A better future for 1 in 12 Canadians starts with rare disease reform | Healthing.ca
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https://canadianrdn.ca/
Home - Canadian Rare Disease Network
Jan 2, 2026 - Rare Lives, Shared Strength Connecting Canada’s rare disease community to advance rare disease care, research, and innovation both in Canada and worldwide....
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Probably Genetic | Free Genetic Testing | Rare Disease Genetic Testing
Free DNA tests for thousands of variants related to rare disease. No credit cards, no appointments, and no insurance necessary. Take our quiz to see if you...
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https://www.foxbusiness.com/video/6387608953112
AI genome sequencing could transform rare disease diagnosis: GeneDx CEO | Fox Business Video
GeneDx CEO Katherine Stueland discusses the company’s AI-driven partnership with Komodo Health, the push to speed rare disease diagnosis and GeneDx’s...
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https://raredisease.net/
Rare Disease Health Info & Community
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https://www.genedx.com/
Genetic Testing for Rare Disease Diagnosis | GeneDx
GeneDx provides advanced genetic testing to help diagnose rare and inherited conditions—helping providers, patients, and partners find answers faster with...
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https://swoop.com/solutions/rare-disease/
Rare Disease Marketing Solutions | Swoop
Apr 22, 2026 - Reach rare disease patients earlier with privacy-safe targeting, predictive data, and real patient communities across 70+ conditions. Built for pharma...
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https://www.rarediseaseadvisor.com/
Rare Disease News, Perspectives & Resources - Rare Disease Advisor
Jan 27, 2026 - Rare Disease News is the premier online resource for the latest rare disease news, perspectives and information.
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https://www.azolifesciences.com/news/20260421/Structured-National-Genomic-Program-can-be-Effective-for-Rare-Disease-Diagnosis.aspx
Structured National Genomic Program can be Effective for Rare Disease Diagnosis
For many families, eight years of uncertainty meant repeated specialist visits, inconclusive genetic tests and the growing fear that a clear answer might never...
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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://donation.rarediseaseday.org/
Donate to Rare Disease Day – Just another WordPress site
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https://bionews.com/
Bionews: The Rare Disease News & Community Network
Feb 25, 2026 - Bionews is a rare disease news and rare disease network that provides trusted information, news, and connections.
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https://geneticalliance.org.uk/campaigns-and-research/rare-disease-uk/
Rare Disease UK - Genetic Alliance UK
Rare Disease UK is a long-standing and pioneering national campaign by Genetic Alliance UK that represents and unites everyone in the rare disease community.
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https://www.cureraredisease.org/team-members/elizabeth-mcnally-md-phd
Cure Rare Disease V2
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https://www.npr.org/2026/02/23/nx-s1-5720948/fda-rare-disease-gene-therapy
FDA says a plausible mechanism can be enough for rare disease approval : NPR
Feb 23, 2026 - The Food and Drug Administration aims to evaluate treatments for rare diseases based on plausible evidence that they would work — without requiring a clinical...
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https://www.cureraredisease.org/
Cure Rare Disease
Cure Rare Disease™ is developing advanced therapeutics for those who have been diagnosed with rare, genetic diseases that have no treatment or cures. Through...
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https://www.grandviewresearch.com/industry-analysis/rare-disease-genetic-testing-market
Rare Disease Genetic Testing Market Size Report, 2033
Rare disease genetic testing market size was $1,293.15mn in 2025 and is projected to reach $3,883.76mn by 2033, at a CAGR of 14.87% from 2026 to 2033
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https://www.cureraredisease.org/team-members/dirk-grimm-phd
Cure Rare Disease V2
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https://www.biopharmadive.com/news/pfizer-tafamidis-vyndamax-settlement-generic-patents-ttr-cardiomyopathy/818705/
Pfizer deals extend patent life for a top-selling rare disease drug | BioPharma Dive
Settlements delaying the arrival of generic versions of tafamidis will protect billions in Pfizer revenue and have implications for others, including BridgeBio...
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https://www.biocryst.com/
BioCryst® | A Pioneer in Rare Disease Therapeutics
Apr 21, 2026 - We are BioCryst, a different kind of biotech company. Learn about our commitment to the rare disease patient community and discover career opportunities.
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https://www.statnews.com/2026/03/25/sarepta-therapeutics-fshd-dm1-study-results/
Sarepta shares rise on early promise for rare disease drugs | STAT
Mar 25, 2026 - New results from small studies in a pair of treatments for rare, muscle-wasting diseases could support the beleaguered company’s pivot.
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https://globalnews.ca/news/11812425/alberta-family-fights-for-life-saving-treatment-for-their-toddler/
Alberta family faces ‘uncertain future’ after toddler’s rare disease care funding denied |...
Apr 24, 2026 - The family of a two-year-old toddler from Airdrie is fighting with the Alberta health-care system over its refusal to pay for potentially life-saving treatment...
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https://www.mordorintelligence.com/market-analysis/rare-disease-drugs
Rare Disease Drugs Research Reports and Market Analysis
9 comprehensive market analysis studies and research reports on the Rare Disease Drugs sector, offering an overview with historical data since 2019 and...
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https://www.ppd.com/therapeutic-expertise/rare-disease/
Rare Disease CRO Therapeutic Research | PPD
Feb 20, 2026 - PPD is deeply committed to advancing rare disease CRO research. Find out more about our patient-centric solutions that reach globally dispersed populations.
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https://healx.ai/
Healx | AI drug discovery | Rare disease treatment
Jan 26, 2023 - At Healx we use AI drug discovery to develop new treatments for rare diseases. We bring treatments from prediction to patient.
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https://www.statnews.com/2026/02/26/rare-disease-treatment-approval-fda-mixed-messages/
Rare disease advocates perplexed by mixed messages at the FDA | STAT
Feb 26, 2026 - FDA has rejected or reversed course on five gene therapies for rare diseases while simultaneously unveiling expedited pathways for new treatment approvals.
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https://jdcorporateblog.com/jd-health-expands-rare-disease-support-assists-over-23000-patients-via-joint-charity-programs/
JD Health Expands Rare Disease Support, Assists Over 23,000 Patients via Joint Charity Programs -...
In observance of Rare Disease Day on February 28, JD Health hosted the 4th Rare Disease Service Ecosystem Forum in Beijing. At the event, JD Health, in...
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https://patch.com/california/temecula/calendar/event/20260516/a25be7d3-ca7f-4850-a9dc-6f4bb8f92768/walk-for-rare-disease-research
May 16 | Walk for Rare Disease Research | Temecula, CA Patch
Cure CLCN6 is hosting a festival and community challenge to walk a collective 5,000 laps to support Rare Disease research!...
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https://rarediseasenepal.org/
Rare Disease Society Nepal
The Rare Diseases Society Nepal is the umbrella organization for the rare disease patients of Nepal.
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https://www.ncl.ac.uk/rare-diseases/
Centre for Rare Disease | Centre for Rare Disease | Newcastle University
As a centre of research excellence, Newcastle has a long and distinguished history of research and clinical care in rare disease.
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https://www.genomemedical.com/
Advancing Rare Disease Care Together | Genome Medical
Apr 7, 2026 - The leading provider of telehealth genetic services. Access expert guidance, accelerate diagnoses and improve rare disease care.
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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...
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https://thairdf.org/
THAIRDF – Thai Rare Disease Foundation
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https://news.cgtn.com/news/2026-04-14/Hainan-s-1-6-day-approval-A-rare-disease-lifeline-1MkG2Ks3tSg/p.html
Hainan's 1.6-day approval: A rare disease lifeline - CGTN
Apr 14, 2026 - From cutting-edge pharmaceuticals to high-tech manufacturing, Hainan's
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https://everyone.plos.org/2026/02/27/rare-disease-day-2026-diverse-community-common-challenges/
Rare Disease Day 2026: Diverse community, common challenges - EveryONE
This blog was prepared and written by PLOS One Associate Editor Alejandro Torrado Pacheco. Since its inception in 2008, Rare Disease Day is observed…
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https://ncats.nih.gov/resources/for-rare-disease-patients-and-advocates
Resources for Rare Disease Patients and Advocates | National Center for Advancing Translational...
Discover a wealth of resources tailored to support individuals affected by rare diseases and their advocates. Access information on patient registries,...
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Probably Genetic | Free Genetic Testing | Rare Disease Genetic Testing
Free DNA tests for thousands of variants related to rare disease. No credit cards, no appointments, and no insurance necessary. Take our quiz to see if you...
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https://www.newstatesman.com/spotlight/healthcare/2026/02/clinical-leadership-can-drive-better-rare-disease-care
Clinical leadership can drive better rare disease care - New Statesman
Feb 26, 2026 - Appointing a dedicated clinical leader for rare diseases could be the game-changer patients urgently need.
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PTC Therapeutics: Pioneering Rare Disease Treatments
Apr 28, 2026 - Explore PTC Therapeutics' commitment to developing innovative treatments for rare diseases.
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https://www.prnewswire.com/news-releases/neurocrine-to-acquire-soleno-therapeutics-expanding-its-endocrinology-and-rare-disease-portfolio-302734531.html
Neurocrine to Acquire Soleno Therapeutics, Expanding Its Endocrinology and Rare Disease Portfolio
Apr 6, 2026 - VYKAT™ XR (diazoxide choline) is the First and Only FDA Approved Treatment for Hyperphagia in Prader-Willi Syndrome and Represents a Transformative Therapy...
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https://rdi.ie/
Rare Diseases Ireland – Supporting rare disease patients and their families in Ireland
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https://www.aol.com/articles/fda-proposes-withdraw-amgens-rare-010444420.html
FDA proposes to withdraw Amgen's rare autoimmune disease drug - AOL
Apr 28, 2026 - Food and Drug Administration's Center for Drug Evaluation and Research on Monday proposed withdrawing approval of Amgen's drug for a group of rare...
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https://nypost.com/health/what-is-pompe-disease/
What is Pompe disease? Inside Paige Shiver's rare condition
Paige Shiver is speaking out about the rare genetic disorder that played a key role in her difficult decision to terminate her pregnancy with ex-Michigan...
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https://healthier.stanfordchildrens.org/en/new-hope-for-treating-a-rare-genetic-disease-before-birth/
New Hope for Treating a Rare Genetic Disease Before Birth - Stanford Medicine Children’s Health Blog
Stanford Medicine Launches a Clinical Trial: Testing prenatal stem cell transplants for Fanconi anemia. Potentially bypasses chemotherapy and radiation.
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https://interestingengineering.com/health/oldest-case-rare-genetic-disease-confirmed
12,000-year-old case of super rare genetic disease confirmed in new study
Jan 31, 2026 - Researchers found the earliest case of a rare genetic disease in a 12,000 year old mother and child.
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https://chiesirarediseases.com/
Chiesi Global Rare Diseases | A Rare Disease Therapeutics Company
Chiesi Global Rare Diseases is a family-owned and run biopharmaceutical company with a commitment to providing transformative care to patients with rare...
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https://hospital.uillinois.edu/patient-stories/gastroenterology-expert-care-for-springfield-mom-with-rare-digestive-disease
UI Health Delivers Expert Care for Springfield Mom with Rare Digestive Disease | UI Health
Learn how a minimally invasive procedure finally gave Emily control over her gastroparesis symptoms.
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https://www.fda.gov/industry/medical-products-rare-diseases-and-conditions/rare-pediatric-disease-designation-and-priority-review-voucher-programs
Rare Pediatric Disease Designation and Priority Review Voucher Programs | FDA
FDA awards rare pediatric disease PRVs to sponsors of rare pediatric disease products that are approved and meet certain criteria. Prior to submitting a...
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https://www.erknet.org/
European Rare Kidney Disease Reference Network
ERKNet is an European Network of Healthcare Professionals specialized in rare kidney diseases. ERKReg, the Network's online patient registry, is a unique...
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