Compassion Faces of MLD

The Premier Family Resource for Metachromatic Leukodystrophy Information & Support





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Supporting Compassion for families, Awareness, Research, and Education.
 


Online Support

The MLD Foundation makes extensive use of email as a means of communication. Email is quick and cost effective - which is of particular benefit for a non-profit organization that does not charge membership fees. We recognize that more than half of all email is junk (spam) and have put many protections in place to try to assure that every MLD Foundation email is of specific interest and benefit.

In addition to the information here on the web site, the MLD Foundation offers several email lists to keep you connected to the Foundation and/or to various groups of MLD affected people.

ANNOUNCEMENT ONLY E-MAIL LIST
The MLD Foundation periodically (3-4 times a year) sends out announcements about key MLD information or activities to an extended list of friends, supporters, professionals, educators, press, etc. via the Announcement List. More information here.

MLD FAMILY DISCUSSION LIST™ ... EMAIL SUPPORT
The MLD Family Discussion List™ is a private on-line gathering of dozens of families affected by MLD. The MLD Family Discussion List™ is the oldest and largest MLD discussion list in the world. You will find parents, primary caregivers, and even a few doctors & other medical staff here -- all bound together by the common experience of MLD. The key criteria to join this list is a direct involvement in the care of a MLD affected individual. In cases where the primary caregiver does not have Internet access, we occasionally allow a friend or relative to join the list and to act as a liaison for the primary caregiver. More information here.

EXTENDED FRENDS & FAMILY E-MAIL DISCUSSION & SUPPORT LIST
The EFF list is targeted at extended family members and friends of families affected by MLD. This list is for those who want to share and learn from each other how to best engage with the primary caregivers and families affected by MLD. More information here.

 

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