#30MillionReasons for Europe to Take Action on Rare Diseases
Rare disease is an issue that no country can tackle alone. And with 30 million people across Europe living with a rare disease, it is an issue that can no longer wait.
This World Amyloidosis Day, Be the Link
Amyloidosis. For thousands of people around the world, this one word, this one diagnosis, can stop life in its tracks. But for many, it’s a word they’ve never heard before.
Can Primary Care Physicians Diagnose Rare Diseases?
Unmet Needs Persist for Amyloidosis Patients in Europe
For patients with rare diseases, the path to diagnosis can be long and difficult. But, as a new policy paper from the European Alliance for Patient Access notes, that’s only one of several hurdles that patients face.
Youth Advocates Aren’t Waiting to Shape Health Policy
In Europe, young patients and health care professionals have decided that now is the time to seek better health policies. I saw this first-hand at February’s #RARE2030 rare disease policy conference.
Bringing Rare Disease to the Forefront
“Be strong, be happy, and enjoy every second of life.” It’s sound advice under any circumstances, but awe-inspiring coming from one of the 300 million people who live with a rare disease.
Pandemic Challenges Shake Europeans with Rare Diseases
European citizens with rare diseases are struggling to maintain treatment during the COVID-19 pandemic, a new report explains.
Europeans Work to Turn Health Care Rights into Realities
by Brian Kennedy, Executive Director, Global Alliance for Patient Access Declaring equal rights is a noble gesture. But history teaches us that it is just the first step in a complex, years-long process – actually establishing and protecting those rights. I was reminded of this reality just recently, when I spoke at a meeting of the […]
