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 |