Rare Disease Day
Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and the National Alliances of Patient Organisations at the national level
Taiwan Foundation For Rare Disorders (TFRD)
TFRD's mission is to improve the life of rare disease patients. We carry out our mission by assisting rare disease patients to receive proper medical treatment and rehabilitation, securing orphan drugs and special nutrients and fulfilling the needs of rare diseases patients in terms of education, employment and long-term care. As a representative for rare disease patients in Taiwan, TFRD advocates the adoption of relevant legislation that ensures rare disease patients’ rights, encourages rare disease research, and raises public rare disease awareness.
Here you will find information on Pompe disease (acid maltase deficiency, glycogen storage disease type II), and links to information elsewhere on the web. The information here is presented with affected families and individuals in mind but may also be of use to medical and scientific students and professionals.
International Pompe Association
The International Pompe Association (IPA) is a federation of Pompe disease patient's groups world-wide. It seeks to coordinate activities and share experience and knowledge between different groups.
National MPS Society
The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these devastating diseases.
This website is for people with Hunter syndrome, their family and friends, and healthcare providers. Explore the site to find useful information, including tips on managing Hunter syndrome and where to go to connect with others. You'll also find personal stories and the chance to share your own.
Learn more about MPS I disease, its symptoms, and how it's passed on through families. Hear from other MPS I patients, get tips on how to cope, find out more about treatment, and access additional resources and support.
Gaucher disease affects fewer than 10,000 people worldwide. This website has been created for people living with Gaucher, their friends and families, and health care professionals.
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