Support Groups
The MPN Research Foundation has compiled a list 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, contact Ann Brazeau at abrazeau@MPNResearchFoundation.org or 312-683-7226 to discuss options. If you have a MPN patient support group but are not listed below, or would like help recruiting more MPN patients, please also contact Ann Brazeau.
Arizona
Phoenix
Contact: Kathy VanMeter at kathyvanmeter@cox.net or by phone at 623-326-2456
Upcoming meeting: To be announced
California
Special presentation by MPN specialist Dr. Catriona Jamieson on Thursday May 31, 2012 at Sanford Consortium for Regenerative Medicine, UCSD La Jolla. RSVP to jahjerpe@sbcglobal.net
Los Angeles
Contact: Ron Anderson at randerson@activetech.com
Upcoming meetings: Sunday April 29th
Time: 1 - 5PM
Location: 25 Appaloosa Lane, Bell Canyon, CA 91307
Note:
San Diego
Contact: Antje Hjerpe jahjerpe@sbcglobal.net
Upcoming meetings: Upcoming meeting: Thursday, May 31 2012
Time: 4pm
Location: Sanford Consortium for Regenerative Medicine, UCSD La Jolla
Note: This is a special presentation by Dr. Catriona Jamieson
San Francisco - Bay Area
Contact: Susan at Susanklepper@hotmail.com
Upcoming meetings: March 18, 2012
Time: TBD
Location: Berkeley
Colorado
Denver
Contact: Mabel at mabel.d.peters@kp.org
Upcoming meetings: March 8, 2012
Location: Franklin Bldg Heyers Conferece Room of Kaiser Permanente
Time: 5:00 pm
Georgia
Atlanta
Contact: Bonnie Evans at kbemje@bellsouth.net or 404-771-0010
Upcoming meetings: To be announced
Hawaii
Oahu
Contact: Albert Loo at looa002@hawaii.rr.com
Upcoming meetings: To be announced
Idaho
Boise
Contact: Susan Hill at jacksue@cableone.net
Upcoming meetings: To be announced
Indiana
Bloomington
Contact: Ellen at hankandellen@bluemarble.net
Upcoming meetings: Saturday May 12, 2012
Time: 12 PM
Location: La Charreada restaurant, 1720 N. Walnut, Bloomington, IN
Illinois
Chicago
RSVP : Michelle Woehrle at mwoehrle@MPNResearchFoundation.org or 312-683-7243
Upcoming meetings: To be announced
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: To be announced
Michigan
Lansing
Contact: Ann Brazeau at abrazeau@MPNResearchFoundation.org
Upcoming meetings: To be announced
New Mexico
Albuquerque
Contact: abq_mpn@yahoo.com
Upcoming meeting: May 5, 2012
Time: 10:15 am - 11:45 am
Location: Erna Fergusson Library, 3700 San Mateo NE Albuquerque, NM 87110 888-8100. We are meeting in the Study Area off Main Lobby
Note: Space is limited so please RSVP as soon as possible.
New York
New York City
Contact: Susan Protter at sapla@aol.com OR 212-580-0115
Upcoming meetings: Monday, June 25th
Time: 6pm
Location: Ropes & Gray conference room at 1211 Avenue of the Americas between 47th and 48th Streets, the News Corporation building. You will need a photo ID to check in on the ground floor. The conference room is on the 38th Floor
North Carolina
Contact: Janice at jcreed@roadrunner.com
Upcoming meetings: Thursday May 10 2012
Time: 7PM Eastern Time
This is a call-in meeting. For call-in instructions contact Janice at the email address listed above.
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 meetings: Saturday April 28
Time: 1-3 pm
Location: HUNTINGDON VALLEY LIBRARY, 625 RED LION RD., HUNTINGDON VALLEY, PA
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
Texas
Central Texas Area
If you would like to volunteer to host a support group in Texas contact abrazeau@mpnresearchfoundation.org or 312-636-3869
Utah
Salt Lake City
Contact: Rynda at ryndabrown2006@yahoo.com
Washington
Seattle
Contact: Seattle MPD Yahoo Group
Upcoming meetings: Found here if you become a group member
Wisconsin
Racine (Includes SE Wisconsin and NE Illinois)
Contact: Karen Luba 262-552-7047 klipluba@yahoo.com
Upcoming meetings: Sunday May 20
Time: 1:30 PM
Location: First Reformed Church, 7110 Old Spring st. 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
Toronto, Ontario
Contact: Kevin Brown at kb@iconhomes.com or 416-420-2266
Upcoming meetings: To be announced
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: To be announced
Click here to order the Japanese MPN patient brochure
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
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
