Virtual Support Groups

We know how important it is to have a support network available more often than just at our Annual Family conference.  

So, to help meet this need, below are Facebook groups in which leukodystrophy families meet to provide support to one another, remotely. Regardless of where you are in the world – these groups can be the next-best-thing.

GROUP TYPE GROUP TYPE LINK PRIVACY LANGUAGE
MLC Families MLC General Group View PRIVATE
LEUKODYSTROPHY ALL General Group View PRIVATE
Leukodystrophy ALL General Group View PRIVATE
Leukodystrophy ALL General Group View PRIVATE
The Leukodystrophy family ALL General Group View PUBLIC
Leukodystrophy Equipment Buy/Sell/Trade ALL Buy and Sell Group View PRIVATE
Metachromatic leukodystrophy awareness group MLD General Group View PUBLIC
Adult Onset Leukodystrophy ADLD ADLD General Group View PRIVATE
Leukodystrophy stories and advice ALL General Group View PRIVATE
POLR3 Caretakers/4H Leukodystrophy POLR3 Leukodystrophy/4H Syndrome General Group View PRIVATE
Leukodystrophy undiagnosed Undiagnosed General Group View PRIVATE
RAISING AWARENESS : Lailiah’s Fight with Leukodystrophy VWM Awareness General Group View PUBLIC
Leukodystrophy Family Support Roundtable ALL General Group View PUBLIC
The Harper Boys Fight Metachromatic Leukodystrophy (MLD) MLD Awarness General Group View PUBLIC
POLR3 Leukodystrophy / 4H Syndrome POLR3 Leukodystrophy/4H Syndrome General Group View PUBLIC
Leukodystrophy ALL General Group View PUBLIC
Alexander’s Disease: a leukodystrophy Alexander’s Disease General Group View PUBLIC
Leukodystrophy Care Givers and Family ALL General Group View PUBLIC
September Is Leukodystrophy Awareness Month ! ALL General Group View PUBLIC
Leukodystrophy Awareness, helping one family at a time. ALL General Group View PUBLIC
My Journey With Demyelinating Leukodystrophy Demyelinating Leukodystrophy General Group View PUBLIC
Support for ALD(Adrenoleukodystrophy) ALD General Group View PRIVATE
MLD Family™ MLD General Group View PRIVATE
MLD Support Group MLD General Group View PRIVATE
MLD Support Association UK MLD General Group View PUBLIC
ALD Support ALD General Group View PRIVATE
RAISING AWARENESS OF ADRENOLEUKODYSTROPHY (ALD) ALD General Group View PRIVATE
ALD Family Support ALD General Group View PRIVATE
ALD/AMN Family ALD/AMN General Group View PRIVATE
Adult Female Carriers of ALD Adult Female Carriers of ALD General Group View PRIVATE
Ald Newborn Screening Babies Ald Newborn Screening Babies General Group View PRIVATE
Female Carriers of ALD Female Carriers of ALD General Group View PRIVATE
Save Our Babies (ALD, MPS-1, Pompe, SMA) Newborn Screening Babies Awareness General Group View PUBLIC
Support For Adrenoleukodystrophy – ALD \ AMN ALD/AMN General Group View PRIVATE
Siblings of ALD Warriors ALD General Group View PRIVATE
Support for Grieving our ALD/Leukodystrophy Angels Before & After ALD General Group View PRIVATE
ADLD Leukodystrophy Support Group ADLD General Group View PRIVATE
APBD Could be an Answer Adult Polyglucosan Body Disease (APBD) General Group View PRIVATE
Aicardi-Goutieres Syndrome Support Group Aicardi-Goutieres Syndrome General Group View PRIVATE
Syndrome aicardi-goutiere Aicardi-Goutieres Syndrome General Group View PRIVATE French
Aicardi-Goutieres Syndrome UK Network Aicardi-Goutieres Syndrome General Group View PRIVATE
Aicardi-Goutières-Syndrom Deutschland Aicardi-Goutieres Syndrome General Group View PRIVATE German
Sindrome di Aicardi-Goutières Aicardi-Goutieres Syndrome General Group View PUBLIC Italian
Adult-Onset Alexander’s Disease Alexander’s Disease General Group View PRIVATE
Alexander Disease Family Support Alexander’s Disease General Group View PRIVATE
Canavan Disease Research/Awareness Canavan General Group View PRIVATE
CADASIL support CADASIL General Group View PUBLIC
CADASIL – ians CADASIL General Group View PRIVATE
We are CADASIL Connected CADASIL General Group View PRIVATE
Cadasil Support UK CADASIL General Group View PRIVATE
CADASIL Oz/NZ CADASIL General Group View PRIVATE
Cerebrotendinous Xanthomatosis (CTX) Research and Support CTX General Group View PRIVATE
Bryce’s Cockayne Syndrome Awareness❤️ Cockayne Syndrome General Group View PRIVATE
Krabbe Families Krabbe General Group View PRIVATE
Iowa Krabbe Network Krabbe General Group View PUBLIC
Krabbe UK Families Krabbe General Group View PRIVATE
The Facebook Gangliosidosis Group. GM1, GM2 Gangliosidosis – Tay-Sachs General Group View PUBLIC
Türkiye GM1 Gangliosidosis Hastaları GM1 Gangliosidosis General Group View PRIVATE Turkish
Tay-Sachs, Sandhoff, or GM-1 & GM-2 Support Group. GM1, GM2 Gangliosidosis – Tay-Sachs General Group View PRIVATE
TAY-SACHS DISEASE,KNOW AS ‘GM2 GANGLIOSIDOSIS’,DEDICATED TO:BABY LEONOR,, GM2 Gangliosidosis – Tay-Sachs General Group View PRIVATE English / Italian
Parents of h-abc H-ABC General Group View PRIVATE
H-abc Sweden H-ABC General Group View PUBLIC
POLR3 Caretakers/4H Leukodystrophy 4H Syndrome/POLR3 General Group View PRIVATE
POLR3 Leukodystrophy / 4H Syndrome 4H Syndrome/POLR4 General Group View PUBLIC
Children with Congenital Cataracts HCC General Group View PRIVATE
Parents w/ Children that have Cataracts and/or other Eye Disorders HCC General Group View PRIVATE
CONGENITAL CATARACTS HCC General Group View PRIVATE
Cataracte Congenitale HCC General Group View PRIVATE French
Leukoencephalopathy, calcifications and cysts ( Labrune syndrome) ( Labrune syndrome) LCC General Group View PRIVATE
LBSL Families LBSL General Group View PRIVATE
Mitochondrial Disease Education Mitochondrial leukodystrophies General Group View PRIVATE
Pelizaeus-Merzbacher Disease (PMD) It’s Rare But Everywhere PMD General Group View PRIVATE
pelizaeus Merzbacher disease & cmvi PMD General Group View PUBLIC
Degenerative Diseases Special Interest Group Degenerative Diseases General Group View PUBLIC
Refsum Friends Refsum General Group View PRIVATE
Salla Disease Support Group Sialic acid storage disorders General Group View PRIVATE
Syndrome de Waardenburg SOX10 General Group View PRIVATE French
Waardenburg Syndrome Support and Awareness SOX10 General Group View PRIVATE
Deaf Waardenburg Syndrome Group UK SOX10 General Group View PRIVATE
Adults & Children with Waardenburg Syndrome SOX10 General Group View PRIVATE
Hirschsprung’s Disease family support UK SOX10 General Group View PRIVATE
Hirschsprung’s & Motility Disorders Support Network (HMDSN) Chat SOX10 General Group View PRIVATE
Hirschsprung’s Disease Help Group SOX10 General Group View PRIVATE
Hirschsprung’s Disease Families & Friends SOX10 General Group View PRIVATE
Vanishing White Matter Disease Support VWM General Group View PRIVATE
SINZELL, ASOCIACION DE AYUDA PARA ENFERMOS CON SINDROME DE ZELLWEGER Y VARA Zellweger Syndrome General Group View PRIVATE Spanish
Zellweger UK – parent/carer support Zellweger Syndrome General Group View PRIVATE
x-link adrenoleukodystrophy x-link adrenoleukodystrophy General Group View PUBLIC