Getting people together
When Ann Brazeau left the MPN Research Foundation to start MPN Advocacy and Education she had a simple idea. MPN Advocacy and Education International would provide the knowledge, support, and resources MPN patients need. Her approach involved bringing affordable seminars to cities, expanding web-based resources and advocating for patient support. Along the way she found herself bringing people together in local communities.
And she saw how that human contact worked to sustain MPN patients.
Now along with her traveling symposia that bring together international and local hematologists with local MPN patients, she’s forging a stronger foundation for patients to reach out and meet one another. MPNA&E has taken the lead incubating and nurturing local community MPN patient groups. These groups, organized and run by patients, bring together MPN patients in social and educational settings.
Frequently there are guest speakers drawn from the local medical community. Beyond exchanging practical information, patient support groups enable MPN patients to break through the isolation that accompanies any rare and potentially deadly disease.
“If you are seeking support and would like a safe place to meet other patients and caregivers, and learn more about your diagnosis, ” says Ann, “you may want to join a support group in your area. If one does not exist, please let us know and we can discuss either creating one, or other options.”
MPNA&E has been publishing a listing of all MPN patient support sites, mirroring the webpage on the MPN Research Foundation’s website. Effective this month they will also handle all maintenance and upgrading of that List freeing the Foundation to pursue its own expanding mission, (See the Patient Registry and Progression Marker stories in this issue.) You can check out the Community Support Group Listings here.
And to help patients organize their own local support groups MPNA&E produced a detailed manual covering creation and successful management of Peer Support Groups based on extensive research into the existing experience of participants. You can download a copy of their Support Group Coordinator guidebook at http://mpnadvocacy.com/mpn-support-groups/.
Meantime, there might still be a few seats available for the Women’ and MPN program to be held in Los Angeles Friday, September 29. You can get information on that event here or contact Kathleen Michael at firstname.lastname@example.org