The Premier Family Resource for Metachromatic Leukodystrophy Information & Support
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Supporting research, awareness, and families.
Care of Your MLD Family Member
this topic is under development - most of these links will take you off-site and some may cease to exist as others change their web sites. Please suggest new links you would like to see here.
SSI - Supplemental Security Income (for US residents)
Late infantile MLD is part of the SSI Compassionate Allowances (CAL) initiative. This initiative is a way to expedite the processing of SSDI and SSI disability claims for applicants whose medical conditions are so severe that their conditions obviously meet Social Security's definition of disability. It is not a separate program from SSA's two disability programs, SSDI and SSI.
A 3rd party summary of the CAL for MLD is here.
Care of your MLD family member
G & J Tubes
Reflux & Fundoplication