What does it mean to care for others with rare neuroimmune disorders?

Care is one of SRNA’s three core values. It’s a word that represents a lot to us, and it’s something we’re always pursuing. 

As an organization, we choose to care by providing resources and information about rare neuroimmune disorders and living with them. These resources can be found at our online Resource Library. Our Medical Professional Network helps connect patients to knowledgeable doctors, and our Myelitis Helpline provides answers to anyone who has a question about their diagnosis.  We also host several podcasts to share information, such as our Ask the Expert and our ABCs of NMOSD podcast series.

As a family, our sole purpose is to represent, protect, and assist those with rare neuroimmune disorders. We are a team of people who have been touched by our community’s resilience, who have cried about the bad news, who have celebrated the victories. Most of us have a rare neuroimmune disorder or have a loved one who’s been impacted by one, and so we have chosen to be here after seeing how changed lives are after receiving a diagnosis. We will seek to ensure that only the best happens for all those in our community, and we will work on behalf of everyone to stop rare neuroimmune disorders and their devastating impacts.

In considering who we are as an organization, and who we are as people, we’d like to stop to ask this question:

What does it mean to care for others with rare neuroimmune disorders?

We encourage you to read the following works, considering the stories shared with us that depict human connection that may help to answer this query.