Support Groups
It might seem like no one understands what you’re going through as an MPN patient, but know that there are others out there. If you want to learn more about your disease, treatment options, or simply meet with other patients, consider attending one of the many support groups listed below.
The MPN Research Foundation has compiled a list of patient support groups for people with myelofibrosis, essential thrombocythemia and polycythemia vera:
- In-person MPN patient support groups that meet locally, both within the U.S. and internationally.
- Online MPN patient support groups for those who prefer online communication with other patients.
In-person MPN Patient Support Groups
United States
If you are interested in joining an MPN patient support group but do not see an area close to you listed or want your group listed, contact us at mwoehrle@mpnresearchfoundation.org or 312-683-7243 to discuss options.
Arizona
Phoenix
Contact: Kathy VanMeter at kathyvanmeter@cox.net or by phone at 623-326-2456
Upcoming meeting: To be announced
California
Los Angeles
Contact: Ron Anderson at randerson@activetech.com
Upcoming meetings: Sunday, April 7th, 2 pm to 5 pm.
Locagtion: We will be meeting at the home of Laurie Dix. RSVP for address & directions
San Diego
Contact: Antje Hjerpe jahjerpe@sbcglobal.net
Upcoming meetings: Sunday, June 9 at 2:00pm
San Francisco - Bay Area
Contact: Susan at Susanklepper@hotmail.com
Upcoming meetings: Sunday March 24th at 1:00pm
Colorado
Denver
Contact: Mabel at mabel.d.peters@kp.org 303-764-8523
Upcoming meetings: June 13th, September 12th, and December12, 2013 @5pm MST
Location:Kaiser Permanente
2045 Franklin St.
Heyers Conference Room
Denver, CO 80205
District of Columbia
Contact: David at 55saveslives@gmail.com
Upcoming meeting:Thursday, February 21, 2013
Time: 6:00 ~ 8:00 PM
Location: the cafeteria of Sibley Memorial Hospital
Note: You can park in the "upper" or "lower" parking lot off of Loughboro Road.
At this meeting we will welcome new members, and discuss what we learned at the February doctor-patient conference in Phoenix. All welcome!
Georgia
Atlanta
Contact: Bonnie Evans at kbemje@bellsouth.net or 404-771-0010
Upcoming meetings:
Idaho
Boise
Contact: Susan Hill at jacksue@cableone.net
Upcoming meetings: To be announced
Indiana
Bloomington
Contact: Ellen at hankandellen@bluemarble.net
Upcoming meetings: To be announced
Illinois
Chicago
Upcoming Meeting: Wednesday, May 29th
Time: 6pm
Location: Oak Park Public Library Small Meeting Room, 834 Lake Street, Oak Park, IL.
Dr. Brady Stein will be speaking. Street and lot parking available.
RSVP: Michelle at mwoehrle@MPNResearchFoundation.org or 312-683-7243
Kentucky
Contact: Susan at smkennedy0@gmail.com
Upcoming meetings: To be announced
Massachusetts and greater New England
Contact: silverlady3@gmail.com or mpdnewengland@gmail.com
Upcoming meeting: TBA
Michigan
Lansing
Contact: Ann Brazeau at abrazeau@MPNResearchFoundation.org
Upcoming meetings: To be announced
Nevada
Contact Cristina at corozco11@cox.net
Upcoming meetings: To be announced
New Mexico
Albuquerque
Contact: abq_mpn@yahoo.com
Upcoming meeting:
New York
New York City
Contact: Jen Bealer at jen.bealer@gmail.com
Upcoming meetings: Thursday April 4th
Location: 1211 Avenue of the Americas
Support Jen's ride for MPN research: http://www.firstgiving.com/fundraiser/jenniferbealer/BealersBigBikeTour
North Carolina
Contact: Janice at jcreed@roadrunner.com
Upcoming meetings: To be announced
Ohio
Akron / Cleveland
Contact: Jay Schmitt at ohiompd@sbcglobal.net
Upcoming Meetings: To be announced
Location: Akron General Health & Wellness Center, 4125 Medina Rd., Akron, OH 44333
Cincinnati, SW Ohio, NE Kentucky, & SE Indiana
Contact: Rebecca Lubitz rebeccalub@aol.com / 513-793-3179
Upcoming meetings: To be announced
Pennsylvania
Philadelphia
Contact: Marie at mtomp57083@comcast.net
Upcoming meeting: April 6
Location: Huntingdon Valley Library, 635 Red Lion Road, Huntingdon Valley, PA
Pittsburgh
Contact: Jean at Npgh.mpn.sup@gmail.com
Upcoming meetings:April 2, 2013 at 7pm.
Location: North Hills Passavant Hospital-Donor Hall (Across from the gift shop)
Puerto Rico
San Juan
Contact: Maribel & Michael Rey, P.O. Box 364885, San Juan, PR 00936
maribel.rey@gmail.com
Upcoming meetings: To be announced
South Carolina
Contact: Janice at jcreed@roadrunner.com
Upcoming meetings: To be announced
Charleston
Contact: Leslie at lesliedispensaperlman@yahoo.com
Upcoming meetings: To be announced-please conntact Leslie for the next date/time.
Texas
Houston
Contact: Charlie Neilsen at charlienielsen@aol.com
Upcoming meetings: Saturday, April 27, 2013
Utah
Salt Lake City
Contact: Rynda at ryndabrown2006@yahoo.com
Washington
Seattle
Contact: Seattle MPD Yahoo Group here
Upcoming Meetings: To be announced
Location: Our usual location which is now called Don Eduardo' s restaurant, 1823 Eastlake Ave. E. Ask for the MPN group. We will catch up with each other and discuss current issues from the MPN conference
Wisconsin
Racine (Includes SE Wisconsin and NE Illinois)
Contact: Marge Blocks at 262-637-4338 / mblocks@wi.rr.com Karen Luba 262-552-7047 klipluba@yahoo.com
Upcoming meetings: June 2, 2013
Location:First Reformed Church, 7110 Old Spring Street, Racine, WI 53406.
Outside the U.S.
Australia
Contact: Ken Young kyoung@yarranet.net.au or go here to be added to the mailing list for MPD Australia.
Upcoming meetings: Announced through mpd-oz website
Canada
Saskatoon, Saskatchewan
Contact: Gordon Walz at g.walz@sasktel.net
Upcoming meetings: To be announced
Edmonton, Alberta
Contact: Cheryl at cap@interbaun.com or 780-940-6569
Upcoming meetings: To be announced
Hamilton, Ontario (Including Toronto, S. Ontario, Western New York)
Contact: mpnontario@gmail.com or call John at 905-892-8238 OR Donna at 905-389-1278
Upcoming meetings: Saturday, May 4th
Location: Hamilton, ON
Vancouver, BC
Contact: Lisa at mpdvancouver@gmail.com
Upcoming meetings: To be announced
France
A support group is forming. Visit www.mpd.tel for more details.
Germany
Contact: MPD-Netzwerk@yahoogroups.de
Upcoming meetings: Announced through their Yahoo group, found here
Japan
Contact: Kaori Taki at patchleojp@yahoo.co.jp
Upcoming meetings: Saturday, June 1, 2013
Time: 17:15
Notes: The group will meet outside Starbucks before proceeding to the restaurant.
More information can be found here: http://groups.yahoo.co.jp/group/mpn_japan/
http://www.mpdnetjapan.org
https://www.facebook.com/mpdnetjapan
Japan (English speaking)
Contact: Ira Wolf at irawolf@aol.com
Upcoming meetings: To be announced
The Netherlands
Contact: MPD Stichting at info@mpd-stichting.nl or 088-0074-300
Upcoming meetings: Saturday, 26 October (10:00 am - 02.30 pm)
Spain
Contact: Peter at MPDSpainPacientes@gmail.com
Upcoming meetings: To be announced
United Kingdom
Upcoming meetings and forum found here
London
Contact: info@mpdvoice.org.uk
Upcoming meetings: May be found here
Scotland
Contact: info@mpdvoice.org.uk
Upcoming meeting: To be announced
Online MPN Patient Support Groups
MPD Chat
MPD Chat is a Gmail group where cyber-friends connected by MPDs, can share troubles, swap information and share their stories. Posts are generally relevant to MPDs but connected issues such as fatigue, pain relief and depression often arise, along with a bit of general chat. We aim to have a happy group where people feel welcome and respected. On our main web site are MPD links, personal experiences of diagnosis and treatment, and a constantly updated database of articles on polycythemia vera, essential thrombocythemia, myelofibrosis and other relevant issues. Posts can be delivered to your inbox as they are sent, in a daily digest or you can read all the discussion on the site.
MPD-Net
Includes an online support group (MPD-Net), answers to frequently asked MPD questions, myeloproliferative disorder biographies and offers medical resources for polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia (Idiopathic Myelofibrosis), and on chronic myelogenous leukemia (CML).
Facebook Myelofibrosis Support
This is a Facebook based group for Myelofibrosis patients.
Myeloproliferative Disease Support and Free Daily Email Digest
Since 1994, the MPDSUPPORT web site and free support email list has offered interesting information on chronic myelogenous leukemia, polycythemia vera, essential thrombocythemia, agnogenic myeloid metaplasia, myelodysplasia, and myelofibrosis. Anyone - patient, family member, or health professional, is welcome to join the growing list of subscribers. The archives are available for you to research information. You can subscribe to the daily digest list by either one of our two easy methods, the EZ web interface, or by email.
Close to 3,000 subscribers from 41+ countries. No censorship. Patient to patient, the list is not affiliated nor controlled by any pharmaceutical company, medical institution, nor any physician or group of physicians. For more information go to www.mpdsupport.org
