Online communities offer support anytime — log in, share advice, or ask a question. Participation in an online community is very convenient, especially due to health concerns and not needing to leave your home. Also, you may live in an area that doesn’t have an in-person support group.
Online communities focus on a particular disorder. Unless indicated, you must be a member to read and post.
These are the largest or most active:
LBD
LBDA Care Partner Facebook Group
https://www.facebook.com/groups/LBDACarePartnerSupportGroup
This is a private Facebook group sponsored by the Lewy Body Dementia Association (LBDA). The group has over 6,000 members. To join, click on the “Join Group” button.
Lewy Body Dementia Carers
https://www.facebook.com/groups/lyndseywilliams
This is a private Facebook group, with over 16,000 members. It was created in 2011 by Lyndsey Williams, whose mother had LBD. To join, click on the “Join Group” button.
Living with Lewy
https://www.facebook.com/groups/LBDALivingwithLewy
This is a private Facebook group ONLY for those living with LBD. It is moderated by the Lewy Body Dementia Association.
Beyond Lewy
https://www.facebook.com/groups/lbdabeyondlewy
This is a private Facebook group for bereaved LBD caregivers. It is moderated by the Lewy Body Dementia Association.
MSA
MSA Connect
https://msa.tradewing.com/
This is a private community with several forums. There is an “Open Forum” with about 2,000 members. The “Patients” forum has fewer then 600 members. This is a relatively new community begun by Mission MSA in early 2024. You must enroll.
Multiple System Atrophy Buddies Facebook Group
https://www.facebook.com/
This private Facebook group has over 5,000 members. While most active members are MSA caregivers, there are a few active members who have an MSA diagnosis. It is moderated by the MSA Coalition (now called Mission MSA). To join, click on the “Join Group” button.
Multiple System Atrophy Facebook Group
https://www.facebook.com/groups/48942097968
This private Facebook (with a purple heart image) has over 8,000 members. While most active members are MSA caregivers, there are a few active members who have an MSA diagnosis. Some of the moderators are the same as for the “MSA Buddies” group. To join, click on the “Join Group” button.
PSP
Progressive Supranuclear Palsy Facebook Group
https://www.facebook.com/
This private Facebook group (with a hummingbird image) has over 10,000 members. Many are based in the UK. While most active members are PSP caregivers, there are a few active members who have a PSP diagnosis. It was created in 2012. One of the founding members is Julia Warwickshire. To join, click on the “Join Group” button.
PSP Association Forum
http://psp.healthunlocked.com
This private HealthUnlocked group has over 9,000 members. Most active members are PSP or CBD caregivers based in the UK. There are a few active members who have a PSP or CBD diagnosis. And there are some US members. Anyone may read. Must be a member to post. Moderated by the PSP Association (based in the UK).
PSP Community on Smart Patients
http://smartpatients.com/communities/psp
The private PSP community on Smart Patients began in January 2018. Most members are PSP caregivers based in the US. Must be a member to read and post. Smart Patients does not publish the number of members.
CBD
CBD Community on Smart Patients
https://www.smartpatients.com/communities/cbd
The private CBD community on Smart Patients began in January 2018. Most members are CBD caregivers based in the US. Must be a member to read and post. Smart Patients does not publish the number of members.