Advice for Patients
Hear more from CTX experts.
If you are suspicious of or diagnosed with CTX, please seek your local healthcare practitioners for professional consultation, as practice and referral systems vary from country to country.
CTX Patient Advocacy and Support Organizations
United Leukodystrophy Foundation (ULF)
The United Leukodystrophy Foundation (ULF) is a non-profit, voluntary health organization dedicated to funding cutting-edge research and to providing patients and their families with disease information and medical referrals. The Foundation is located in DeKalb, Illinois.
Allianz Chronischer Seltener Erkrankungen (ACHSE)
Alliance of Chronic Rare Diseases
ACHSE serves as the voice of the four million people living in Germany with one of the more than 6,000 rare diseases. As the umbrella organization of 127 self-help organizations, ACHSE is committed to improving the quality of life and the lives of those affected by rare diseases.
Deutsches Leukodystrophie Netzwerk
German Leukodystrophy Network
Founded in 2002, LEUKONET DEUTSCHLAND is a network of experts who are dedicated to the study of leukodystrophy diseases. The organization funds both clinical, patient-oriented research as well as basic research in the field of leukodystrophies.
Europäische Vereinigung gegen Leukodystrophien
European Leukodystrophy Association
The goal of ELA is to help promote international understanding of leukodystrophy diseases, provide education and support families living with these diseases, and to raise funds to help support research to fight against leukodystrophies.
EURORDIS – Rare Diseases Europe
EURORDIS-Rare Diseases Europe is a unique, non-profit alliance consisting of over 700 rare disease patient organizations from more than 60 countries that work together to improve the lives of the 30 million people in Europe living with a rare disease.
Orphanet Portal for Rare Diseases and Orphan Drugs
Orphanet is a valuable resource which features a comprehensive databank of information related to rare diseases and orphan drugs including:
- Encyclopedia of rare diseases
- Inventory of orphan drugs
- Directories of patient organizations, professionals, medical and research institutions, laboratories, and research projects.
Orphanet aims to provide high-quality, current information on rare diseases, and ensure equal access to knowledge for all stakeholders.
Stofwisselingsziekten (VKS)
In 1994, VKS was established as an Association for Children with Metabolic Diseases. In 2004, the name was changed to Adults and Children with Metabolic Diseases, which allowed the familiar abbreviation to be preserved while at the same time involving adult patients with metabolic disease. The number of metabolic diseases that occur within the association increased steadily to more than 160 different specific disorders. VKS has received only a limited basic subsidy from the government. The largest part of the activity budget now comes from project financing.
Concerns About CTX?
If you are suspicious of or diagnosed with CTX, please seek your local healthcare practitioners for professional consultation, as practice and referral systems vary from country to country.
