Peer-to-Peer Support Program
We are exploring interest in launching a Peer-to-Peer Support Program in order to connect patients in the GNE Myopathy community with each other.
We know from experience that many patients and family members are looking for someone to connect with who can relate, understand and give suggestions/advice regarding various questions and challenges the GNE Myopathy community encounters throughout their disease journey.
It has been proven that peer support can be helpful through the sharing of experiences, information, emotional support, encouragement and can help decrease one’s sense of isolation. Plus, the mutual reciprocity of the relationship can foster shared problem solving, with both parties receiving and giving help on shared concerns.
Ultimately, we hope that this will help increase a person’s confidence in managing the disease, and increase one’s social support and understanding of self-care in order to help cope with the challenges faced by GNE Myopathy patients and their loved ones.
We plan to explore training opportunities for interested participants to receive guidance on supporting others under the supervision and monitoring of NDF’s Emotional Wellness Director Carol Gelbard, LCSW
We need patients’ input in order to make this as successful, productive and meaningful as possible.
We have questions about who might be interested in participating, how we can best match people and what key factors are most important to people when considering matches.
Please fill out this brief survey using this link to express your possible interest in being a part of the Peer-to Peer-Matching Program and provide your invaluable input about the important variables we should be considering while building this program.
It is important that we get as many responses as possible, so that we can gauge interest in our pursuing this effort. Please note that information you share in this survey and/or program will not be used for any other purpose(s) and submitting this survey does not, in any way, commit you to participating in the future.