1NMOSD

Support Groups

The “Our Journey Group” offers teens with NMOSD the opportunity to share coming of age experiences.  

Join “The NMO Clinic” to connect with other NMO patients.  

“My Devic’s Family (NMO) Group” is designed to connect newly diagnosed NMO patients.  

Helpful Links

Dr. Farrah Mateen, Massachusetts General Hospital, advocates for improved NMO awareness inside and out of the clinic.  

Dr. Michael Levy addresses the challenges in accurately diagnosing NMO.  

Patients living with NMO incur not only physical burdens, but also financial burdens.  

A woman with NMO and comorbidities maintains optimism by raising awareness for a cure.  

Despite the devastating symptoms of NMO, this patient propelled her writing career forward.  

2Kidney Transplant Desensitization / Rejection

Support Groups

If you are a soon-to-be organ transplant recipient, you are not alone. Browse online and local support groups offered through United Network for Organ Sharing (UNOS).  

Members of the “Living Kidney Donors Support Group” provide valuable insights into what patients can expect during and post-transplant.  

The “Kidney Transplant Recipient Support Group” offers a chance to interact and discuss one’s journey as a transplant survivor.  

Kidney Smart is a robust educational platform for kidney transplant patients.  

Helpful Links

Dr. Keith Melancon, Chief of the GW Transplant Institute and professor of surgery at The George Washington University Hospital, leads a webinar debunking common myths about the kidney donation process.  

Riley Crowder’s kidney failure did not stop her from achieving her dreams.  

Follow this journalist’s story of overcoming kidney failure.  

The path to diagnosis is complicated and sometimes misunderstood by HCPs.  

Join a monthly support group and invite your family or caregivers.  

Renal Support Network’s Patient Education promotes a sense of community.  

3Myasthenia Gravis

Support Groups

The Myasthenia Gravis group is a supportive and informative resource for patients, caregivers, and family members.  

MG may be rare, but patients from all over have come together to form the MG Caregivers group to provide educational resources and support to peers.  

Maddy’s MG Support is a social media platform designed to encourage support and care for those affected by this devastating disease.  

The Myasthenia Gravis Unmasked page is a place to share stories and raise awareness.  

The Myasthenia Gravis Support Group promotes open dialogue between patients and medical professionals.  

Helpful Links

A day in the life of an MG patient.  

This mother opens up about her experience caring for a child with MG.  

An outline of the causes, symptoms, treatment, and pathology of MG.  

Patients reflect on their diagnosis and how they have navigated life with MG.  

Sean Brock, a celebrated culinary sensation turned MG patient, is a passionate advocate for the MG community.  

“Myasthenia Gravis News” website.  

4IGG-4 Related Diseases

Support Groups

Join the “Living with IgG4-Related Disease” group to connect with peers undergoing similar treatment challenges.  

The IgG4-RD group is a useful resource for patients recently diagnosed to learn more about the disease and expand their social network.  

Helpful Links

A physician’s perspective on IgG4-RD and how this disease can affect any organ system.  

A heartfelt story of an IgG4-RD patient’s wish coming true.  

John Stone, M.D., MPH, Director of Clinical Rheumatology at Mass General, gives a talk on IgG4-related systemic disease.  

5Sjögren's Syndrome

Support Groups

The Sjögren's Syndrome Support Group provides patients with a platform to share their unique experiences with this chronic autoimmune disease.  

The Sjögren's Syndrome Support and Information group provides a chance to connect and creates a sense of community.  

The Sjögren's Syndrome Private Discussions group is a place to post your concerns and questions about this disease as well as voice your triumphs.  

The Sjögren's Syndrome Foundation is a great resource for patients to become active in support groups across the U.S.  

Helpful Links

Venus Williams opens up about living with Sjögren's and the importance of an early diagnosis in shaping one's treatment.  

Gain a deeper insight into how patients overcome daily obstacles despite overwhelming fatigue.  

One patient chronicles why Sjögren's is much more than dry eyes.  

This caregiver ignites confidence in other caregivers with similar circumstances.  

Samantha Moss shares what she has learned about managing her chronic illness.  

This patient's journey showcases how to be proactive after being diagnosed with Sjögren's syndrome.  

Katherine does not let Sjögren's syndrome define her life.  

While rare for men to have Sjögren's syndrome, Joe's journey deserves the same support as any other.