Support groups

They say that time heals all wounds, but when you’re living with a rare autoimmune disorder that has no cure, every relapse leaves lasting damage, both emotional and physical. Last week, I attended a patient day for the neuroinflammatory community here in southwestern Ontario, Canada, where I had the opportunity…

The greatest challenge I’ve had to overcome as someone with neuromyelitis optica (NMO) — something I’ve heard echoed by other patients — is the need for better support. This begins with the expectations we each have of those in our lives. When those expectations aren’t met, we…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day. The trip took a few years of planning and preparation, including surviving…

After experiencing all of the challenges that came with my 13-year-old daughter Bella’s neuromyelitis optica (NMO) diagnosis and the rareness of the disease, I wanted to find a way to connect with other NMO patients and caregivers. Bella was so young that I felt I needed the connections to…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

Every month for the past 13 years, I’ve had a standing date booked in my calendar. The third Saturday of each month is blocked off for three hours of self-care in the form of a support group meeting. I’m the token neuromyelitis optica (NMO) patient in a group with seven…

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet that need, the National Organization for Rare Disorders (NORD)’s Rare Caregiver Respite Program may be a helpful resource. The program seeks to give a…

The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to speak at its upcoming virtual Living Rare, Living Stronger NORD Patient and Family Forum. The interactive, patient-focused forum will be held online June 26-27. The deadline to apply for…

Leaders in the U.S. rare disease community came together recently for a webinar to present helpful information on how to start a nonprofit and patient registry. They shared about how their respective organizations came to be, as well as the benefits of creating patient registries and how they can help…