MOGAD support groups allow 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 a patient can use support groups to help bridge this gap.
What is a MOG Antibody Disease support group, and why might you want to join one?
A support group is a collection of people with 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.
Diagnosed with a rare neuroimmune condition such as MOG Antibody Disease can be scary. However, there are many support groups you can turn to for help and advice. These support groups can relieve that you are not the only person dealing with the effects of the disease.
It is also important to note that these support groups are for ideas, support, and advice. It would be best if you did not use them over a qualified healthcare provider for treatment. Please talk to your medical provider before changing your medication or treatment.
MOGAD Support Groups for Everyone
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 awaiting MOG testing.
With 2,800 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 that advocates raising awareness about MOGAD, including educating patients and caregivers and supporting research.
Being the biggest group also means that this is the best group to stay updated with essential information in the MOG Antibody Disease world. If you're looking for the one group covering most of the bases, this is likely the one for you.
While many MOG Antibody Disease support groups are hosted on Facebook, this community is on Reddit under the subreddit /r/MOGAD.
Reddit is a large group of forums sharing news and content, broken down into subreddits depending on that forum's topic.
The MOGAD subreddit involves the discussion of MOG Antibody Disease and the sharing of experiences. While the community is still relatively new, Reddit is one of the most popular websites worldwide. I expect this community to expand quickly as more people are diagnosed with MOGAD.
Remember that anyone can view all information posted to Reddit, 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.
While this group has fewer members than the MOG / Anti MOG group, this group is still one of the largest Facebook support groups for MOGAD, with over 700 members.
This one could be a good pick if you're looking for a global group that may be more manageable than the other large support groups.
The Human Collective Project support groups meetings are hosted by the Sumaira Foundation for those affected by MOGAD & NMOSD.
These support groups happen at various times throughout the month by TSF's Patient and Caregiver ambassadors worldwide. You can sign up for the meetings using the Sumaira Foundation's website.
Many other support groups do not allow fundraiser posts on their pages. This group is the only one enabling campaigns for supporting initiatives for MOGAD.
Other topics outside of NMO & MOGAD fundraisers are not allowed in the group. The exception is posting from foundations and non-profit organisations linked to NMO & MOGAD. Fundraisers range from ones by organisations involved in research to ones 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 want to support fundraisers related to MOGAD, I recommend joining this one.
Location-Based Support Groups
The UK MOGAD Support Group is specifically for patients, carers, and interested parties in the United Kingdom.
This group is a partnership between MyMyelitis, The MOG Project, and The MOG Blog to support those within the UK. Topics discussed in this group will be specific to the UK, including treatment, diagnosis, and care, including how the country's NHS and other healthcare providers recognise and treat MOGAD.
To join the group, you must be a resident of the UK and be an individual, friend, or family member who is 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 diagnosed with MOG Antibody Disease in the UK.
NMO Spectrum France is a french support group specifically for patients, their families, friends, and benefactors. This group covers MOGAD, NMO/Devic's Disease, and those awaiting diagnosis for inflammation of the central nervous system.
Association NMO France runs this group, a charitable organisation set up to bring together french and french speaking people affected by NMOSD, MOGAD, and related conditions.
If you live in France or a french speaking country, you will find this group useful!
NMOSD/MOGAD Danmark is a public support group for patients, relatives, and people who want to know more about the illness.
You can post in this support group without joining it, so be aware when disclosing personal health information. In this group, you can find posts from people affected by MOGAD and NMOSD in Denmark.
Transverse Myelitis Scotland is a support group for MOGAD and other neurological conditions such as ADEM, AFM, MOGAD, NMOSD, ON, and TM, which are connected to Scotland.
You can expect to find questions about these various conditions, such as medications, physical expectations, etc. Many of the conditions covered in this group have a lot in common, so you may find helpful information from those not affected by MOGAD.
The Australia and New Zealand MOGAD group brings together those dealing with these two countries conditions.
This group is limited to those currently living in Australia and New Zealand. However, carers and undiagnosed patients with a possible MOGAD diagnosis are also accepted.
Suppose you're currently living in Australia or New Zealand and are presently diagnosed with MOG Antibody Disease. In that case, this group will be ideal for 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.
If you are currently living in a 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 82 members at the time of writing, appears to be active, and involves in-person meetups. So, if you're looking to meet others in the NorCal area with MOGAD, this looks like the ideal group.
If you reside in California, this support group will likely be helpful, 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 helpful to you.
Like the NorCal group, this is a local support group based in Texas. If you're residing in the state, this could be an excellent opportunity to connect with others in your area.
Are you looking for healthcare recommendations or support in the Texas area? This group is likely beneficial for you.
Age-Based Support Groups
Many 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.
Since I'm in the UK, these calls occur late into the evening. But staying up, especially for these calls, has been worth it! I have learned more about MOGAD from the Zoom calls with this group than anywhere else.
The MOG Sloggers support group is another hosted by The MOG Project for adult MOG Antibody Disease patients. This group has a suggested age of 30+, but if you are diagnosed with MOGAD, you are welcome to join.
This group also offers Zoom calls every third Tuesday at 7:45 pm EST (12:45 am GMT). You can sign up for the calls inside the group or on The MOG Projects website.
The Little Hummingbird Nest support group is a support group that brings together the parents of children diagnosed with MOGAD.
NMOSD/MOGAD Pediatric Support is a group by the Guthy-Jackson Charitable Foundation specifically for parents of children diagnosed with MOG Antibody Disease or NMOSD.
To gain access to this group, you must be a parent of a MOGAD/NMOSD-diagnosed child aged 0-19 and answer all the questions to be approved to join.
Treatment-Based Support Groups
The Intravenous Immunoglobulin (IVIg) Support Group is for patients taking IVIG and their illnesses.
In this group, you can expect patients with various illnesses to talk about their experiences with IVIG treatment. However, it is essential to note that this group does not allow the sale, distribution, or donation of IVIG treatment.
IVIG/SCIG Patient & Provider Support Group is a support group for US patients, caregivers, and providers who seek information about immune globulin therapy.
In this group, you can expect patients with various conditions dealing with IVIG/SCIG, including health insurance, and challenges with these treatments. If you are based in the US and have had IVIG/SCIG treatment issues, consider joining this one.
Gender-Based Support Groups
This group was created so that women have a group to talk about topics related to women. Women may feel uncomfortable sharing more sensitive topics in larger groups, so that this one may be more suitable.
I cannot give any more information about this group (I don't believe they would let me in!) This group will benefit you if you are a woman with MOGAD looking to converse with others.
Similar to the Women with NMO/MOG/TM group, NMO & MOGAD patients created this group for women to have a safe space to talk about sensitive topics.
Once again, I cannot give any more information about this group apart from the fact that it does not explicitly include Transverse Myelitis. Suppose you are a woman with MOGAD looking for a place to discuss sensitive gender-related topics. In that case, this group could be beneficial to you.
The Men with NMO support group is one specifically for men with MOG Antibody Disease or NMO.
This group describes itself as a "safe place for men with NMO/MOGAD to discuss anything and everything about living with this disease" and is run by the Guthy-Jackson Charitable Foundation.
This group also offers monthly Zoom calls for its members, and all ages can join. If you're a man with MOGAD looking to connect with others, this group will be a great fit.
Is your MOG Antibody Disease support group not on this list?
If your support group needs to be added to the list above, feel free to get in touch with us to have it added to this page.