At this time, the ULF is unaware of any leukodystrophy specific support groups that meet regularly.

While we encourage everyone to attend our annual Family Conference, we know how important it is to have a support network available every single day.

In the list below, you can find many Facebook groups where leukodystrophy families are providing support to one another through social media. Regardless of where you are in the world – these groups can be the next-best-thing.

GROUPTYPEGROUP TYPELINKPRIVACYLANGUAGE
MLC FamiliesMLCGeneral GroupViewPRIVATE
LEUKODYSTROPHYALLGeneral GroupViewPRIVATE
LeukodystrophyALLGeneral GroupViewPRIVATE
LeukodystrophyALLGeneral GroupViewPRIVATE
The Leukodystrophy familyALLGeneral GroupViewPUBLIC
Leukodystrophy Equipment Buy/Sell/TradeALLBuy and Sell GroupViewPRIVATE
Metachromatic leukodystrophy awareness groupMLDGeneral GroupViewPUBLIC
Adult Onset Leukodystrophy ADLDADLDGeneral GroupViewPRIVATE
Leukodystrophy stories and adviceALLGeneral GroupViewPRIVATE
POLR3 Caretakers/4H LeukodystrophyPOLR3 Leukodystrophy/4H SyndromeGeneral GroupViewPRIVATE
Leukodystrophy undiagnosedUndiagnosedGeneral GroupViewPRIVATE
RAISING AWARENESS : Lailiah's Fight with LeukodystrophyVWM AwarenessGeneral GroupViewPUBLIC
Leukodystrophy Family Support RoundtableALLGeneral GroupViewPUBLIC
The Harper Boys Fight Metachromatic Leukodystrophy (MLD)MLD AwarnessGeneral GroupViewPUBLIC
POLR3 Leukodystrophy / 4H SyndromePOLR3 Leukodystrophy/4H SyndromeGeneral GroupViewPUBLIC
LeukodystrophyALLGeneral GroupViewPUBLIC
Alexander's Disease: a leukodystrophyAlexander's DiseaseGeneral GroupViewPUBLIC
Leukodystrophy Care Givers and FamilyALLGeneral GroupViewPUBLIC
September Is Leukodystrophy Awareness Month !ALLGeneral GroupViewPUBLIC
Leukodystrophy Awareness, helping one family at a time.ALLGeneral GroupViewPUBLIC
My Journey With Demyelinating LeukodystrophyDemyelinating LeukodystrophyGeneral GroupViewPUBLIC
Support for ALD(Adrenoleukodystrophy)ALDGeneral GroupViewPRIVATE
MLD Family™MLDGeneral GroupViewPRIVATE
MLD Support GroupMLDGeneral GroupViewPRIVATE
MLD Support Association UKMLDGeneral GroupViewPUBLIC
ALD SupportALDGeneral GroupViewPRIVATE
RAISING AWARENESS OF ADRENOLEUKODYSTROPHY (ALD)ALDGeneral GroupViewPRIVATE
ALD Family SupportALDGeneral GroupViewPRIVATE
ALD/AMN FamilyALD/AMNGeneral GroupViewPRIVATE
Adult Female Carriers of ALDAdult Female Carriers of ALDGeneral GroupViewPRIVATE
Ald Newborn Screening BabiesAld Newborn Screening BabiesGeneral GroupViewPRIVATE
Female Carriers of ALDFemale Carriers of ALDGeneral GroupViewPRIVATE
Save Our Babies (ALD, MPS-1, Pompe, SMA)Newborn Screening Babies AwarenessGeneral GroupViewPUBLIC
Support For Adrenoleukodystrophy - ALD \ AMNALD/AMNGeneral GroupViewPRIVATE
Siblings of ALD Warriors ALDGeneral GroupViewPRIVATE
Support for Grieving our ALD/Leukodystrophy Angels Before & AfterALD General GroupViewPRIVATE
ADLD Leukodystrophy Support GroupADLDGeneral GroupViewPRIVATE
APBD Could be an AnswerAdult Polyglucosan Body Disease (APBD)General GroupViewPRIVATE
Aicardi-Goutieres Syndrome Support GroupAicardi-Goutieres SyndromeGeneral GroupViewPRIVATE
Syndrome aicardi-goutiereAicardi-Goutieres SyndromeGeneral GroupViewPRIVATEFrench
Aicardi-Goutieres Syndrome UK NetworkAicardi-Goutieres SyndromeGeneral GroupViewPRIVATE
Aicardi-Goutières-Syndrom DeutschlandAicardi-Goutieres SyndromeGeneral GroupViewPRIVATEGerman
Sindrome di Aicardi-GoutièresAicardi-Goutieres SyndromeGeneral GroupViewPUBLICItalian
Adult-Onset Alexander's DiseaseAlexander's DiseaseGeneral GroupViewPRIVATE
Alexander Disease Family SupportAlexander's DiseaseGeneral GroupViewPRIVATE
Canavan Disease Research/AwarenessCanavanGeneral GroupViewPRIVATE
CADASIL supportCADASIL General GroupViewPUBLIC
CADASIL - iansCADASIL General GroupViewPRIVATE
We are CADASIL ConnectedCADASIL General GroupViewPRIVATE
Cadasil Support UKCADASIL General GroupViewPRIVATE
CADASIL Oz/NZCADASIL General GroupViewPRIVATE
Cerebrotendinous Xanthomatosis (CTX) Research and SupportCTXGeneral GroupViewPRIVATE
Bryce's Cockayne Syndrome Awareness❤️Cockayne Syndrome General GroupViewPRIVATE
Krabbe FamiliesKrabbeGeneral GroupViewPRIVATE
Iowa Krabbe NetworkKrabbeGeneral GroupViewPUBLIC
Krabbe UK FamiliesKrabbeGeneral GroupViewPRIVATE
The Facebook Gangliosidosis Group.GM1, GM2 Gangliosidosis - Tay-SachsGeneral GroupViewPUBLIC
Türkiye GM1 Gangliosidosis HastalarıGM1 GangliosidosisGeneral GroupViewPRIVATETurkish
Tay-Sachs, Sandhoff, or GM-1 & GM-2 Support Group.GM1, GM2 Gangliosidosis - Tay-SachsGeneral GroupViewPRIVATE
TAY-SACHS DISEASE,KNOW AS 'GM2 GANGLIOSIDOSIS',DEDICATED TO:BABY LEONOR,,GM2 Gangliosidosis - Tay-SachsGeneral GroupViewPRIVATEEnglish / Italian
Parents of h-abcH-ABCGeneral GroupViewPRIVATE
H-abc SwedenH-ABCGeneral GroupViewPUBLIC
POLR3 Caretakers/4H Leukodystrophy4H Syndrome/POLR3General GroupViewPRIVATE
POLR3 Leukodystrophy / 4H Syndrome4H Syndrome/POLR4General GroupViewPUBLIC
Children with Congenital CataractsHCCGeneral GroupViewPRIVATE
Parents w/ Children that have Cataracts and/or other Eye DisordersHCCGeneral GroupViewPRIVATE
CONGENITAL CATARACTSHCCGeneral GroupViewPRIVATE
Cataracte CongenitaleHCCGeneral GroupViewPRIVATEFrench
Leukoencephalopathy, calcifications and cysts ( Labrune syndrome) ( Labrune syndrome) LCCGeneral GroupViewPRIVATE
LBSL FamiliesLBSLGeneral GroupViewPRIVATE
Mitochondrial Disease EducationMitochondrial leukodystrophiesGeneral GroupViewPRIVATE
Pelizaeus-Merzbacher Disease (PMD) It's Rare But EverywherePMDGeneral GroupViewPRIVATE
pelizaeus Merzbacher disease & cmviPMDGeneral GroupViewPUBLIC
Degenerative Diseases Special Interest GroupDegenerative Diseases General GroupViewPUBLIC
Refsum FriendsRefsum General GroupViewPRIVATE
Salla Disease Support GroupSialic acid storage disordersGeneral GroupViewPRIVATE
Syndrome de WaardenburgSOX10General GroupViewPRIVATEFrench
Waardenburg Syndrome Support and AwarenessSOX10General GroupViewPRIVATE
Deaf Waardenburg Syndrome Group UKSOX10General GroupViewPRIVATE
Adults & Children with Waardenburg SyndromeSOX10General GroupViewPRIVATE
Hirschsprung's Disease family support UKSOX10General GroupViewPRIVATE
Hirschsprung's & Motility Disorders Support Network (HMDSN) ChatSOX10General GroupViewPRIVATE
Hirschsprung's Disease Help GroupSOX10General GroupViewPRIVATE
Hirschsprung's Disease Families & FriendsSOX10General GroupViewPRIVATE
Vanishing White Matter Disease SupportVWMGeneral GroupViewPRIVATE
SINZELL, ASOCIACION DE AYUDA PARA ENFERMOS CON SINDROME DE ZELLWEGER Y VARAZellweger SyndromeGeneral GroupViewPRIVATESpanish
Zellweger UK - parent/carer supportZellweger SyndromeGeneral GroupViewPRIVATE
x-link adrenoleukodystrophyx-link adrenoleukodystrophyGeneral GroupViewPUBLIC
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