Myelom-Gruppe Rhein-Main

Last modified: 12 January 2013

Setting up a Patient Support Group

A key component to learning to live with myeloma successfully is helping patients and their family and friends cope with their cancer experience by increasing their knowledge, positive attitude, and coping skills. Support is essential to help navigate through the challenges and paths that multiple myeloma can confront patients and their caregivers. Patient support groups can provide the map and experience: they are designed to provide mutual support and education to members who may feel a little less alone by meeting with others whose situations are similar to their own.

Myeloma Euronet is a new informal organization of national organizations dedicated to providing their best support services to people living with multiple myeloma and their loved ones. Each participating organization, whose names are listed in the Members section of this website, is experienced in forming and sustaining patient support groups. A summary of their knowledge and experience is given in the manual "How to Establish a Multiple Myeloma Patient Group - A Practical Guide" which can be downloaded from this site.

We offer you this manual with our hope that it provides you the guidance to create your own patient support group in your area. Emotional and social support for people living with multiple myeloma is as important as medical care. The community of support you create can help all that participate learn to work through their feelings of fear and frustration and to ultimately live life more fully.

The shorter version is meant for readers with an initial interest in setting up a patient support group. The longer version is meant for readers who want more detailed information.

Download a copy of the manual:

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