Every ECD journey is unique. There is no one-size-fits-all diet, and nutrition should always complement, not replace, medical treatment. Listening to your body and working closely with your healthcare team is key. If you do not have a nutritionist on your medical team, you may want to check with your doctor about adding one to the team.
At ECDGA, we believe that informed choices empower patients. Nutrition is one more way to support your strength, resilience, and quality of life.
To hear from nutritionists about healthy eating with a rare disease like ECD, please see the videos listed in the
on YouTube. When viewing the list, please scroll down for English Versions.