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
MyMyelitis Community
The MyMyelitis Community is a community hosted on Discord for those affected by MOG Antibody Disease and similar conditions.
The community acts as a resource hub and allows for interaction and collaboration so that the members can can take control of their own health and live the life they want despite their illness.
If you're interested in joining others who are on a journey to improve their health with MOG Antibody Disease then sign up now!
MOG Antibody / Anti MOG Support and Info
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 over 3,700 members this group is the biggest 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.
MOGAD Reddit
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 relatively small, Reddit is one of the most popular websites worldwide and I expect this community to grow 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.
MOG Antibody Disease Support Group
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 1,200 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.
Human Collective Project Meetings
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. Support groups are also available in many different languages including English, French, Spanish, Italian and German. You can sign up for the meetings using the Sumaira Foundation's website.
NMO/MOG: Our fight for a cure
The NMO/MOG: Our fight for a cure is a Facebook support group created to post fundraisers to support finding a cure for NMOSD or MOG Antibody Disease.
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
UK MOGAD Support Group
The UK MOGAD Support Group is specifically for patients, carers, and interested parties in the United Kingdom.
This group is a partnership between MyMyelitis and The MOG Project 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 Groupe
NMO Groupe 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
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 including MOGAD
Transverse Myelitis Scotland including MOGAD 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.
Australia/ New Zealand group for people with MOG & their Supports
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!
Southeast Asian NMO/MOG/TM Community
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.
NorCal NMO/MOG Support
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.
Texas NMO/MOG/TM Group
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
MOG/NMOSD Support for Young Adults
MOG/NMOSD Support for Young Adults is a Facebook support group aimed at 18 to 30 year-olds with MOG Antibody Disease or NMOSD. If you're within this age range, I recommend joining this one!
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.
This group hosts monthly Zoom calls on the first Monday of each month at 4:45 pm EST (9:45 pm GMT). You can sign up for the calls inside the group or on The MOG Project's website.
MOG Sloggers - Finding Our Way Zoom Group (Adult Patients of MOGAD)
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 of the month 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 MOG Project - Little Hummingbird Nest (Children with MOGAD) Zoom Call
The Little Hummingbird Nest support group is a support group that brings together the parents of children diagnosed with MOGAD.
This support group also offers Zoom calls bi-monthly on the first Tuesday of every other month. To sign up, you can join the group on Facebook or visit The MOG Project's website for more information.
NMOSD / MOGAD Pediatric Support
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
Intravenous Immunoglobulin (IVIg) Support Group
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
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.
Prednisone Support
Prednisone Support is a support group created to help and support anyone on Prednisone/Prednisolone for any reason.
This support group can offer advice on corticosteroids' side effects to those who need information about dealing with them.
Prednisone Diet Support Group
The Prednisone Diet Support Group is a support group for those taking Prednisolone/Prednisolone who is struggling with their weight. This includes those who want support to maintain a healthy weight or encouragement while dieting after prednisone treatment.
Gender-Based Support Groups
Women with NMO/MOG/TM
The Women with NMO/MOG/TM is a Facebook support group specifically for women with NMO, MOG Antibody Disease, or Transverse Myelitis.
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.
NMO/MOG Divas
NMO/MOG Divas is a Facebook support group for women with NMO or MOG Antibody Disease.
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.
Men with NMO
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.
