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 provide members the opportunity 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 in the United Kingdom.
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.
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 biweekly Zoom calls on Mondays at 5:45pm EST (10:45pm GMT). The first call for 2022 is scheduled for February 7th and you can sign up for the calls inside the group or on The MOG Project's website.
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 2,300 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.
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.
Whilst many MOG Antibody Disease support groups are hosted on Facebook, this community is located website Reddit under the subreddit /r/MOGAD.
Reddit is a large group of forums which is used to share news and content. It is broken down into ‘subreddits’ depending on the topic of that forum.
This subreddit is dedicated for the discussion of MOG Antibody Disease and the sharing of experiences. Whilst the community is still fairly new, Reddit is one of the most popular websites worldwide and I expect this community to grow quickly.
Just remember that all information posted to Reddit is available to be viewed by anyone viewing the website so be cautious when sharing personal details.
The MOG Antibody Disease support group is a global support group for patients with MOGAD and their family members.
Whilst this group has less members than the MOG / Anti MOG group, this group is still one of the largest Facebook support groups for MOGAD with almost 500 members.
If you’re looking for a global group which may not be as overwhelming as the other large support groups then this one could be a good pick for you.
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 more sensitive topics 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.
The Australia and New Zealand MOGAD group is all about bringing together those involved with dealing with the condition in these two countries.
This group is limited to those who are currently living in Australia and New Zealand, although carers and undiagnosed patients with a possible MOGAD diagnosis are also accepted.
If you’re currently living in Australia or New Zealand and currently diagnosed with MOG Antibody Disease then this group will be ideal 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 on every third Tuesday evening at 7:45pm EST (12:45am GMT). The first meeting of 2022 is scheduled for February 15th and you can sign up for the meeting inside the group or on The MOG Projects website.
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 bi-monthly on the first Tuesday of every other month.
The next meeting is scheduled for February 1st at 7:30 EST (12:30am GMT). To sign up visit The MOG Project's website for more information.
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.
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 73 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 NorCal 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.