Providing education, support, advocacy, and promoting research
for CTX patients, their families, and medical professionals
who treat and study this rare disease.
Many people living and working with rare diseases struggle to access appropriate health and social care, find useful information, or participate in research. Alongside multiple medical issues that are often associated with a rare disease, it is common for patients, families, and caregivers to experience psychological stress, loneliness, tiredness, discouragement, unemployment, lack of information and difficulty locating appropriate health care. This is often made worse by a lack of peer and community support services.
Unlike more common conditions, rare diseases like CTX encounter more obstacles like lack of community and peer support because of the rarity of the disease. The internet has increasingly become a source of information and support by families affected by CTX. You can access many online patient resources below.
Join our mailing list to receive information and news as we begin to gather and expand the CTX community.
1586 Sumneytown Pike
PO Box 1322
Kulpsville, PA 19443