Advocacy & support
People with rare diseases face particular challenges in terms of delays to diagnosis, and a lack of awareness and medical research on their disease. It is common to want to seek out additional information and support not just from healthcare professionals, however because NDM is a rare disease, you might not know anyone else who has it.
Support groups and patient advisory groups connect people with the same rare disease to share experiences. Patient advocacy groups (PAGs) are organisations usually run by patients to support the needs of other patients, including campaigning for scientific research or raising awareness of the disease.
Ask your doctor to refer you to a group or PAG that supports the NDM community.