Europe’s umbrella organization for 800 rare disease associations has developed a sweeping initiative to help the continent’s 30 million rare disease patients and their caregivers learn about their conditions, find assistance and receive treatment. Eurordis-Rare Diseases Europe hopes to improve the current piecemeal treatment and support program with a holistic,…
People with rare diseases know that the right government policies can make a big difference in the quality of their own lives, and those of their caregivers. But most lawmakers aren’t experts in even one well-known disease — let alone the world’s estimated 7,000 rare disorders. So how does the…
Bogdana Patrascu will never forget the day she learned that her then-3-year-old daughter, Alberta, had spinal muscular atrophy (SMA). The news came in a March 2016 phone call from Alberta’s pediatric neurologist, as Patrascu — a radiologist in Timisoara, Romania — was driving home from work. She had taken…
