B.C. Teen First Cured of Rare Disease via Gene Editing
An 18-year-old British Columbia student is the first person globally cured of chronic granulomatous disease through groundbreaking gene editing treatment, marking a medical milestone.
Category : Rare Diseases
Montreal Officer Honors Father Lost to Rare Cancer
A Montreal police officer pays tribute to his father, a volunteer firefighter who died from bile duct cancer, highlighting the impact of rare diseases on families and communities.
Medical Mystery: Girl's Body Shrinks, Doctors Seek Diagnosis
A six-year-old girl is baffling medical experts as her body inexplicably shrinks, with doctors struggling to diagnose the rare condition. The case highlights challenges in pediatric health and rare diseases.
Cheryl Petruk's Journey from Caregiver to Patient Advocacy Leader
After her husband's rare cancer diagnosis, Cheryl Petruk became a powerful patient advocate, founding the Canadian MPN Network and Heal Canada to support thousands. Discover her inspiring story.
B.C. woman pleads for government to cover MS drug
A British Columbia woman is calling on the provincial government to fund a new multiple sclerosis drug. Her plea highlights the critical gap in coverage for patients.
Sask. woman avoids MAID after Glenn Beck's help
Jolene Van Alstine, a 45-year-old Saskatchewan mother with a rare disease, was scheduled for MAID on Jan. 7, 2026. American commentator Glenn Beck intervened, securing U.S. medical consultations and offering hope.
Windsor man's public plea for A+ kidney donor
Dwight Hesman of Windsor, Ont., makes a desperate public appeal for a life-saving A+ kidney donor. His story highlights the critical need for organ donation in Canada.
Stem cell donor drive launched to save Calgary mother
A Calgary-raised mother of two in Regina fights leukemia. A stem cell donor drive is underway to find a match and save her life. Learn how you can help.
No fixes for B.C.'s rare disease drug program after 5 months
Five months after Premier David Eby called for change, B.C.'s costly rare disease drug program remains unreformed. The review continues, leaving families in limbo.
Health Canada Approves Drug for Rare Disease
Health Canada has granted approval for a new pharmaceutical treatment targeting a rare disease, offering hope for patients. Learn about the regulatory decision and its impact.
Grey's Anatomy Star Eric Dane Shares ALS Update
Actor Eric Dane discusses life with ALS, his new role as an ambassador for I AM ALS, and the urgent need for continued research funding as a key law nears expiration.
Manitoba approves rare disease drug coverage
Jeremy Bray wins drug coverage for rare condition after provincial announcement. Read how this decision impacts rare disease patients across Manitoba.
Winnipeg man denied $300k treatment coverage
Jeremy Bray fights for life-changing spinal muscular atrophy treatment after Manitoba denies coverage. Learn about his journey and healthcare challenges.
Manitoba family seeks coverage for rare disease medication
A Winnipeg family battles for provincial coverage of expensive medication risdiplam to treat a rare genetic disease. Learn how you can support their cause.
Mom Survives Rare Disease by Managing Her Medical Care
Taylor Coffman shares how advocating for herself in hospital after rare pregnancy-triggered illness saved her life. Learn how patient empowerment can change outcomes.
Jesse Jackson Hospitalized with Rare Neurological Condition
Civil rights leader Rev. Jesse Jackson has been hospitalized while managing progressive supranuclear palsy, a rare neurodegenerative disorder. Learn about his health journey and family support.
Kelowna mother's race against time for liver transplant
A Kelowna mother faces a desperate wait for a life-saving liver transplant as BC's healthcare system struggles with organ availability. Her story highlights the urgent need for organ donors.
Service Dog Transforms Life of Woman With Rare Condition
A West Island woman living with POTS finds freedom and independence through her life-changing service dog, Rowan. Discover how this remarkable partnership is rewriting the rules of living with invisible disabilities.
Science Battles Immunity's Dark Side: Disease of 1000 Faces
Canadian researchers are making groundbreaking discoveries about autoimmune diseases, particularly lupus, revealing how our immune system turns against us and what new treatments could revolutionize patient care.
Manitoba Approves Life-Saving Drug for Dying Boy
A Steinbach family celebrates as the Manitoba government approves coverage for a costly medication that could save their son's life after months of uncertainty and desperate appeals.
Acromegaly Awareness Day Highlights Rare Diagnosis Challenge
Discover how Atlantic Canada is raising awareness for acromegaly, a rare hormonal disorder that often takes years to diagnose. Learn about symptoms, diagnosis challenges, and patient stories from the region.
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