If you have a confirmed diagnosis of Bet-mannosidosis, register for our CoRDS Longitudinal Study at: https://cords.sanfordresearch.org/activation-form, by clicking “Enroll Now,” which will take you to the Activation Form where you can specify the disease you are registering for, Beta-mannosidosis.

Register to the International Society for Mannosidosis and Related Diseases (ISMRD) by sending your name, name of affected individual, address, phone number, email, and diagnosis to: info@ismrd.org

When your child is diagnosed with a rare disease, the world shifts beneath your feet. Answers are scarce. The path is unclear. And you feel impossibly alone. You are not alone. Millions of mothers share your journey, but until now, there’s never been a resource crafted just for you. Rare Mamas is your lifeline, a heartfelt, practical, and empowering guidebook specifically created for mothers of children with rare diseases—mothers like you, who carry a fierce love through the unknown.

Raregivers provides emotional support to families living with rare, chronic and complex diseases. The reality of daily long-term caregiving is unimaginable.

Redtreehouse.org supports families and children with challenges, disabilities, and health care needs by helping them find the resources they need to thrive.

Hope can change everything. · Over 10,000 LightZ have been gifted to children all over the U.S. Will you help us spread more hope? · More videos on YouTube.