Whether you are newly diagnosed or have been living with a diagnosis for years we have a Peer Connect Leader (PCL) who can empathize with your situation. PCLs are volunteers who have been diagnosed with a rare neuroimmune disorder.
Sharing experiences with others who truly understand what it is to live with or care for another with a rare neuroimmune disorder can be life-changing. Peer Connect Leaders are trusted individuals who share important information and offer support. They can provide emotional support and share what they have learned. Our PCLs are not doctors, so they cannot dispense medical advice; however, they can direct you to resources that can help answer your questions.
Fill out the form, and you will be matched with a PCL. 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 Connect Leader? What issues are discussed?
The relationship between Peers is natural, friendly, and supportive in nature. PCLs never dispense any medical advice or try and diagnose a medical problem, but they can help point you in the right direction to access medically accurate information.
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; and more.
Do I need to live in the same city as the PCL to get support?
Not at all. Matched peers 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 or with similar backgrounds in order to share the best resources available.
What communication methods does the Peer Connect Program use?
Matched peers 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 is the program monitored? Is there a follow up?
We send follow up communications (usually email) to matched peers 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 PCL are not on the same page, please email us at [email protected].
How often do we communicate?
Each matched peer determines the frequency and duration of their contact and is generally guided by the needs of the person seeking support. Some pairs speak regularly and have even traveled to meet in person. Others 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.
Our Peer Connect Leaders are located all over the United States and Canada. Here, you can see some of the connections that have already been made through the Peer Connect Program.
Peer Connect Program Supported in part by