Welcome to our comprehensive list of MOG Antibody Disease Support Groups. Here you can view all the groups available and find the best one for you!
A support group is a collection of people who share similar interests or experiences. A MOG Antibody Disease support group will include people who have been diagnosed or have experience with dealing with the disease.
MOGAD support groups give opportunity for members to share experiences about their diagnosis, treatment, feelings and other first hand experiences.
Healthcare providers treating patients with MOGAD may not give the required emotional support to the patients. But support groups can be used to help bridge this gap.
Being diagnosed with a rare neuroimmune condition such as MOG Antibody Disease can be scary. However, there any many support groups where you can turn to for help and advice.
These support groups can provide a sense of relief that you are not the only person who is dealing with the effects of the disease.
It is also important to note that these support groups are for ideas, support and advice. They should not be used over a qualified healthcare provider for treatment. Please talk to your your medical provider before making changes to your medication or treatment.
The UK MOGAD Support Group is a group specifically for patients, carers and interested parties within the UK.
This group as a partnership between MyMyelitis, The MOG Project and The MOG Blog to offer support to those within the UK.
Topics discussed in this group will be specific to the UK including treatment, diagnosis and care. This will include how the NHS and other healthcare providers in the country are recognising and treating MOGAD.
To join the group you must be a resident of the UK and be an individual, friend or family member who are diagnosed, involved with or have an interest in the disease.
Zoom calls are also offered by this group on a regular basis and take place at a more friendlier time (7-8pm GMT) for those in the UK . You can sign up to the zoom calls via the support group page.
If you're living in the UK, consider joining this group to find others who are also being treated for MOG Antibody Disease in the UK.
Many of the conversations here are more relevant to the young adult age group. Some examples include dating and managing relationships with MOGAD and whether or not you should disclose your disease when applying for jobs or colleges/universities.
This group hosts weekly Zoom calls on Mondays at 5:45pm EST (10:45pm GMT).
Since I'm in the UK, these calls take place late into the evening for me. But staying up especially for these calls has been worth it! I have learnt more about MOGAD from the Zoom calls with this group than anywhere else.
The MOG Antibody / Anti MOG Support and Info is a Facebook support group for individuals, friends and family of those who suffer from MOG Antibody Disease and those who are awaiting MOG testing.
With 1,500 members at the time of writing, this group is the biggest and most active support group for MOGAD. Expect posts about treatments, symptom management and healthcare provider recommendations.
The group belongs to The MOG Project, a non-profit organisation which advocates for raising awareness about MOGAD. This includes the education of patients and caregivers and supporting research.
Also expect announcements, surveys and other useful information from the Siegal Rare Neuroimmune Association (SRNA) and related non-profits. Being the biggest group also means that this is the best group to stay up to date with important information in the MOG Antibody Disease world.
If you're looking for the one group which covers most of the bases then this is likely to be the one for you.
The MOG Sloggers support group is another one hosted by The MOG Project for adult MOG Antibody Disease patients. This group has a suggested age of 30+ but no one will be turned away if they have been diagnosed with MOGAD.
This group also offers Zoom calls, often every couple of weeks at 12-1pm EST (6pm GMT). Medical professionals have also been invited as guests to previous meetings.
The Little Hummingbird Nest support group is Zoom support group which is all about bringing together the parents of children diagnosed with MOGAD. Meetings are now hosted regularly on the first Tuesday night of every other month.
To find out when the next meeting is and how to join it, visit The MOG Project's website.
Many of the other support groups do not allow fundraiser posts on their pages. This is the only allowing campaigns for supporting initiatives for MOGAD.
Other topics outside of NMO & MOGAD fundraisers are not allowed in the group. The exception being posts from foundations and non-profit organisations linked to NMO & MOGAD.
Fundraisers range from ones by organisations involved in research to ones which are created by individuals looking to raise funds for personal equipment.
If you are looking to raise funds for a cause related to MOG Antibody Disease could be a good group for you. Likewise, if you are looking to support fundraisers related to MOGAD then I would recommend joining this one.
This group was created so that women have a group to talk about topics related to women. Women may not feel comfortable sharing their issues in larger groups and so this one may be more suitable.
I cannot give any more information about this group (I don't believe they would let me in...). If you are a woman with MOGAD looking to have conversations with others then this group would likely benefit you.
Similar to the Women with NMO/MOG/TM group, this group was created specifically so that women have a safe space to talk about sensitive topics.
Once again, I cannot give any more information about this group apart from it does not specifically include Transverse Myelitis. If you are a woman with MOGAD looking for a place to discuss sensitive gender related topics then this group sounds like it could be beneficial to you.
If you are from or living in a South East Asian country then this group will be good for you. Southeast Asian NMO/MOG/TM Community is a Facebook group specifically for those from SEA countries such as Bangladesh, Bhutan, India, Myanmar, Nepal, Pakistan and Sri Lanka.
Whilst the group is still relatively new at the time of writing, it member count is growing fast. If you are currently living in an SEA country then this support group is likely of use to you.
Individuals with MOG Antibody Disease in Northern California may want to join the NorCal NMO/MOG Support group.
The group has 59 members at the time of writing and appears to be active. In person meetups also seem to be organised within this groups. So if you're looking to meet others in the area with MOGAD, this looks like the ideal group for you.
If you happen to reside in California then this support group will likely be helpful to you. Especially when considering potential healthcare providers or treatment options in the area.
For those with MOGAD residing in Texas, the Texas NMO/MOG/TM Group could be useful to you.
Similar to the NorCal group, this is a local support group based in Texas. If you're residing in the state then this could be a good opportunity for you to connect with others in your area.
Looking for healthcare recommendations or support in the Texas area? This group is likely to be the one for you.
Is your MOG Antibody Disease support group not on this list?
If your support group is not shown on the list above, please contact us to have it added to this page.