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.

• Cerebrotendinous Xanthomatosis (CTX) Research and Support (Facebook, closed group)
• Leukodystrophy (Facebook, closed group)
• Leukodystrophy (Facebook, closed group)
• Leukodystrophy (Facebook, closed group)
• Leukodystrophy (Facebook, public group)
• Leukodystrophy Equipment Buy/Sell/Trade (Facebook, closed group)
• The Leukodystrophy Family (Facebook, public group)
• Leukodystrophy Stories and Advice (Facebook, closed group)
• Leukodystrophy Family Support Roundtable (Facebook, public group)
• Leukodystrophy Care Givers and Family (Facebook, public group)
• September is Leukodystrophy Awareness Month (Facebook, public group)
• Leukodystrophy Awareness, helping one family at a time. (Facebook, public group)
• National Caregiving Alliance
• Caregiver Action Network