More Than You Can Imagine: Rare Disease Day
Rare Disease Day aims to raise global awareness for the more than 7,000 rare diseases impacting individuals from all across the world. This year’s theme, More Than You Can Imagine, strives to highlight the everyday burden of living with rare diseases, bringing attention to the research, care and effort needed for these patients.
Global Alliance for Patient Access: World Amyloidosis Day
Amyloidosis is a rare disease that affects vital organs. Amyloidosis can look very different from patient to patient, but in each case, the body produces an abnormal protein called amyloid that inhibits organ function.
Illuminating Advocacy: Rare Disease Day
February 29 unites more than 300 million people worldwide who share a common challenge: living with a rare disease.
Access to Care Shouldn’t be Rare
Everyone deserves equitable access to health care. For the 300 million people across the globe living with a rare disease, however, this is no easy feat.
The Importance of Early Diagnosis and Real-World Evidence to Drive Better Patient Outcomes
Of the 500,000 people across Europe who live with a rare neurological disease, 60% remain undiagnosed.1 A recent roundtable event, Rare Neurological Diseases in the EU, explored how early diagnosis and real-world evidence can help.
Driving Better Patient Outcomes in Rare Neurological Diseases
Across Europe, between 5000 and 8000 people face rare, chronically disabling or life-threatening disorders.
Be the Link on World Amyloidosis Day
What can advocates do about a rare, complex disease that impacts people across the globe but is highly unfamiliar even to medical professionals? Raise awareness.
Mission Possible for Rare Disease
The time to put rare disease policy into action is now. And this year’s 11th European Conference on Rare Diseases & Orphan Products focused on doing just that.
A New Rare Disease Action Plan for England
An estimated 3.5 million people in the U.K. are affected by a rare disease. But, with more than 7,000 different rare diseases discovered thus far, clinicians and patients can find it difficult to keep up.
Shining a Light on Unmet Needs for Rare Disease Patients
The 300 million people across the globe living with a rare disease have unique needs, many of them unmet. Rare Disease Day offers advocates a chance to help shed light on these challenges.
