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Rare Disease

Navigating Turbulent Waters Of Access To An Orphan Drug For A Rare Disease: My Family’s Story 

Facing rare disease challenges, a family calls for change to ensure affordable, life-saving treatments for all.  I am Jennifer Adams, a family physician in Ottawa, and this is my family’s story. Our journey began when my daughter, now five, was diagnosed at 18 months with primary hyperoxaluria type 1 (PH1), a rare and life-threatening genetic … Continued