Our Peers are people diagnosed with a rare neuroimmune disorder or care partners of someone diagnosed with a rare neuroimmune disorder. They can provide emotional support and share what they have learned. Our Peers are not doctors, so they cannot dispense medical advice; however, they can direct you to resources that can help answer your questions.
Whether you are newly diagnosed, have been living with a diagnosis for years, or are a family member or care partner, we have a Peer who can empathize with your situation.
Fill out the form, and you will be matched with a Peer. We match based on diagnosis, age, gender, interests, location, and more.
Our current program can only match with English-speaking members — and assist with non-urgent matters. If you are a non-English speaker or have a situation that requires more immediate attention, please contact us at [email protected]
Once you are matched, someone will contact you to set up the next steps.
What sorts of questions can I ask my Peer? What issues are discussed?
The relationship between Peers is a natural, friendly, and supportive in nature. Peers never dispense any medical advice or try and diagnose a medical problem.
Conversation topics might include: pain issues; what treatments exist; experience navigating the medical system; support from family and friends; relationships and dating; life issues that surround living with a rare neuroimmune disorder; diet and exercise.
Do I need to live in the same city as the Peer?
Not at all. Matched pairs could be living anywhere, as long as they are able to communicate in a way that works for you (e-mail, phone, video chat, instant messaging, social media, in-person, etc.). You can indicate a preference for finding a local match and we will do our best to meet your needs, if possible. In all cases, we will try to find the person closest to you in order to share the best resources available.
What communication methods does the Peer Connect Program use?
You and your Peer can decide how to keep in touch in a way that is convenient for all parties involved. Some examples include: telephone, e-mail, video chat, instant messaging, social media, meeting face-to-face, etc.
How are connected Peers monitored? Is there a follow up?
We send follow up communications (usually email) to matched pairs after the first contact takes place to verify details and to ensure that all parties are satisfied. If at any time you feel like you and your Peer are not on the same page, please call (+1 855-380-3330 ext. 5,) or email Rebecca Whitney.
How often do Peers communicate?
Each matched pair determines the frequency and duration of their contact and is generally guided by the needs of the support seeker. Some pairs speak regularly and have even traveled great distances to meet in person. Other matched pairs require less contact. Sometimes all that is needed is one phone call – and that’s fine, as long as your needs are met.
What age group does the Peer Connect Program serve?
We are currently only connecting Peers who are 18-years-old and older. We can however, match parents or legal guardians of a child diagnosed. Another way for those under 18-years-old to meet others is to attend our annual Quality of Life Family Camp. For more information go to our Quality of Life Family Camp page. You may also email Rebecca Whitney, Associate Director, Pediatric Programs for possibilities to connect with other families, teens, or children diagnosed.
How do I become a Peer Connect Leader?
We are always looking to expand our programs. If you feel like you would be a good fit as a Peer Connect Leader, please contact us and we will assist you in the next steps.
Peer Connect Program Supported in part by