Health Awareness
2021 Rare Diseases
-
s Sponsored
My Rare Life: Rare disease patients call for change
We asked people living with rare diseases in Europe about the biggest challenges they face and what they think needs to change. Hear their perspectives by watching our video. There are 30 million people living with a Rare Disease in Europe.1 That’s 30 million rising to the challenge of living life with a rare disease,...
-
Lifelong care for PKU – treatment matters
Phenylketonuria (PKU) is a rare genetic disorder identified by newborn screening. It is caused by an enzyme deficiency leading to the abnormal build-up of phenylalanine (part of protein) in the body. Inadequate treatment of PKU can cause intellectual disability with low IQ, behavioural problems, inattention, depression, and anxiety. In pregnant women with poorly controlled PKU,...
-
The future of rare diseases starts today
New policy recommendations from the rare disease community aim to improve the future of those living with a rare disease in Europe. The health and future of 30 million people living with a rare disease in Europe should not be left to luck or chance. Today, 20 years after the first European rare disease legislation,...
