On-line LGMD Support Groups on Facebook:

LGMD Awareness Day Toolkit

The LGMD Awareness Foundation is on a mission to shine a global spotlight on limb-girdle muscular dystrophy (LGMD) and champion the cause for improved access to diagnosis, care, and treatment for those living with this condition. As we celebrate a decade of progress, we will be rolling out an Awareness Day Toolkit in spring of 2024, designed to empower and engage our community in advocacy like never before.

LGMD Awareness Day Toolkit

Spotlights

Explore our ‘Spotlights’ section, where we shine a light on the inspiring stories and invaluable contributions of individuals with LGMD, their dedicated caregivers, supporting organizations, and the clinicians who support them.

The journey with limb-girdle muscular dystrophy (LGMD) can be challenging, but no one should navigate it alone. The “Online LGMD Support Groups on Facebook” page offers a curated list of private and public Facebook groups, each tailored to specific needs and topics related to LGMD. From groups dedicated to undiagnosed subtypes to forums for caregivers, mothers, and even discussions on mental health, these platforms foster a sense of community, understanding, and shared experiences. Whether you’re seeking advice, looking to share your story, or simply want to connect with others who understand, these groups provide a safe and supportive space for everyone touched by LGMD.

LGMD Support Groups on Facebook

No one should have to navigate the LGMD journey alone and there can be great strength in shared experiences.

Social media has profoundly changed the way people with LGMD connect to others — around the corner and around the world. Thankfully, LGMD patients and their family members are now able to access peer support via the internet. No longer do individuals diagnosed with LGMD, family members and/or caregivers have to feel alone in dealing with this rare disease. Through Facebook, a number of on-line LGMD related peer support groups have been established. ** An active Facebook account is required **

Forums for sharing support, experiences, and thoughts about living with LGMD

Most are “Private” Facebook Groups for privacy…individuals must “Request to Join”

LGMD: Beyond Labels & Limitations – for ALL forms of LGMD
Limb Girdle Warriors – for ALL forms of LGMD
Living with Limb-Girdle Muscular Dystrophy – for ALL forms of LGMD

For LGMD1B

LGMD1B – for LGMD1B
Limb Girdle Muscular Dystrophy Type 1b – for LGMD1B
Limb Girdle Muscular Dystrophy Type 1b – for LGMD1B (a “Public” Facebook group)

For LGMD1D and all dominant forms of LGMD

Limb Girdle Muscular Dystrophy Type 1D and Dnajb6 subgroup – for LGMD1D and all dominant forms of LGMD

For LGMD1F

Distrofia Muscular de Cinturas (LGMD1F) – Portuguese group for LGMD1F
LGMD1F – Hungary Page For LGMD1F

For LGMD2A

C3 Community – for LGMD2A / a form of Calpainopathy
LGMD 2A – Die Muskeldystrophie vom Gliedergürteltyp – German group for LGMD2A / Calpainopathy
LGMD2A – победим вместе!– Russian group for LGMD2A
Limb Girdle Muscular Dystrophy 2A (CALPAINOPATHY) – for LGMD2A
Müsküler distrofi (lgmd2a) – for LGMD2A (a “Public” Facebook group)

For LGMD2B

Discovering Dysferlinopathy – for LGMD2B / Dysferlinopathy
Lgmd2B – Dysferlinopathy – German group for LGMD2B / Dysferlinopathy
LGMD 2B Muskeldystrophie des Gliedergelenkgürtels – German group for LGMD2B / Dysferlinopathy
Limb-Girdle Muscular Dystrophy 2b – for LGMD2B / Dysferlinopathy

For LGMD2D

LGMD2D – for LGMD2D
LGMD2D Patients, Parents, and Caregivers – for LGMD2D

For LGMD2E

LGMD2E – for LGMD2E (a “Public” Facebook group)

For LGMD2G

Limb-girdle muscular dystrophy type 2G – for LGMD2G (a “Public” Facebook group)

For LGMD2I

LGMD2I – for LGMD2I
LGMD2i (Sverige) – Swedish group for LGMD2i
Limb Girdle Muscular Dystrophy 2i (LGMD2i) Community Page – for LGMD2i
Parents and Family of LGMD2I – for LGMD2I
LGMD2I – German “Secret Group” for individuals with LGMD2I – must contact group admin to request to join
LGMD2I / Limb Girdle 2I Dansk Gruppe – Danish group for LGMD2I

For LGMD2J

LGMD2J – for LGMD2J
Titin Related Muscle and Heart Disorders Discussion Group – for LGMD2J

For LGMD2L

LGMD2L – for LGMD2L

For LGMD2S

Limb Girdle Muscular Dystrophy Type 2S – for LGMD2S

For LGMD2T

Limb Girdle Muscular Dystrophy Type 2T – for LGMD2T

Topic Focused Forums

A forum specifically for those who have limb-girdle weakness and an undiagnosed subtype of Muscular Dystrophy to share history, symptoms and other information with the goal of getting a confirmed genetic diagnosis. (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

Muscular Dystrophy Subtype Unknown

A forum specifically for spouses and/or caregivers. (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

Spouses Fighting Against MD

A forum for sharing support and thoughts about living with limb-girdle muscular dystrophy (LGMD) as we age (50+). (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

LGMD Platinum Club for 50+

A forum for discussing gender-specific topics as they relate to LGMD. (These are “Private” Facebook Groups for privacy…individuals must “Request to Join”)

Women Living with MD – for women only
MUJERES CON DISTROFIA MUSCULAR – for women only (Spanish language)
Guys MD – for men only
Women with Neuromuscular Disabilities – for women only

A forum for teens living with Muscular Dystrophy. (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

Teens with Muscular Dystrophy – for teens only (ages 13-19)
Teen Wheelchair Users

A forum for teens who have a parent with LGMD. (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

A Special Place 4 Kids With Parents With Limb Girdle Muscular Dystrophy – You must be under 18 to join.

A forum for moms, stepmoms, adoptive moms, and expecting moms living with Muscular Dystrophy — or even ladies with MD who would like to have children one day and would benefit from asking questions. (This is a “Closed” Facebook Groups for privacy…individuals must “Request to Join”)

Moms with MD

A forum for mothers who have children diagnosed with Muscular Dystrophy. (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

MD Moms
Mothers of Children with Limb Girdle Muscular Dystrophy – specific to LGMD

A forum for those with specific mental wellness needs

Mental Health with MD (This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”)

A forum, where individuals with Muscular Dystrophy can ask questions and share experiences about obtaining Disability Benefits including Social Security Disability Insurance (SSDI,), Supplemental Security Income (SSI), and Private Disability Insurance (LTD).

Muscular Dystrophy Disability Benefit Workshop

A forum for discussing advocacy and other issues & concerns regarding living with muscular dystrophy.

The Speak Foundation – This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”
Living with M.D. – This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”
Muscular Dystrophy Awareness of Kenya (MUDAK) – This is a public group

A forum for discussing weight loss for individuals who have muscular dystrophy such as LGMD

- Weight Watchers for those with Muscular Dystrophy – This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”
- Muscular Dystrophy Weight Loss – This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”

A forum for discussing pulmonary issues and other breathing concerns regarding living with muscular dystrophy This is a “Private” Facebook Groups for privacy…individuals must “Request to Join”

Breathe with MD – A support group for MD patients, parents and/or caregivers to discuss topics related to pulmonary function decline and for those on non-invasive and invasive ventilation to share tips and insights.

The following Facebook page offers a “private” – member only/invitation based support group for the muscular dystrophy community. You can learn more at

Neuromuscular Disease MD Patient Group (sponsored by The Speak Foundation) – This private or secret group is for individuals with muscular dystrophy to share. This group is only for the person dealing with the disease as some topics are so personal. Contact the Speak Foundation for entry into their private peer support group.