"With an orphan disease, the support can be hard to find. I found that support at the MPN research foundation." - Juan Alderete, PV '06. On Hydroxurea/baby-aspirin and living a quality life! Photo credit: Marianne Williams

Get the Support You Need

Living with PV, ET, or MF can be frustrating and confusing, largely because these conditions are so misunderstood. Both patient and caregivers have options for support, both online and in person. The great thing is that these aren’t mutually exclusive. Feel free to involved yourself in any and all as you need them. This list is for the use by patients, their supporters and doctors only.

Peer to Peer Support – Imerman’s Angels offers peer-to-peer support from people who have gone through this already – both patients and caregivers. If you’re in need of support or if you’re ready to mentor someone else, click here to get support now. 

Online Support Groups – There are many online forums and groups organized around MPNs. These are easy ways to get introduced to people with PV, ET, and MF. Caregivers also participate in online forums, and they are excellent formats in which to share information.

In-person MPN patient support groups are opportunities which meet face to face to learn and network with other patients and caregivers. We have compiled a list of in-person patient support groups below. If you don't see one in your area contact Raquel at rnunez@mpnresearchfoundation.org or 312-683-7249

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 rnunez@mpnresearchfoundation.org or 312-683-7249 to discuss options.


Contact: Kathy VanMeter at kathyvanmeter@cox.net or by phone at 623-326-2456


Los Angeles
Contact: Ron Anderson at randerson@activetech.com
Upcoming meetings: Sunday, June 22 at 1 pm.

Coachella Valley
Contact: Lindy: suttonprescott@aol.com

San Diego
Contact: Antje Hjerpe jahjerpe@sbcglobal.net

San Francisco - Bay Area
Contact: Susan at Susanklepper@hotmail.com


Contact: Mabel at mabel.d.peters@kp.org 303-764-8523
Upcoming meetings:
Location:Kaiser Permanente -5pm
2045 Franklin St.
Heyers Conference Room
Denver, CO 80205

District of Columbia

Contact: David at 55saveslives@gmail.com


Contact: Natalie at 727-258-1115
Upcoming meeting: Sunday May 4, 2014 at 1:00 pm
Where: Panera at Bryan Dairy/102
6701 Bryan Dairy Rd, Largo, 33777


Contact: Bonnie Evans at kbemje@bellsouth.net or 404-771-0010

SUNDAY: March 22, 2015, 2pm to 4pm
Where: Georgia Tech Student Center in the Crescent Room, 350 Ferst Drive, NW, Atlanta, Ga 30332 ( Thanks to Holly Shikano )
Speaker: Dr. Elliott Winton of Winship Cancer Center at Emory University to brief us on the recent ASH Conference and other recent breakthroughs.

Please RSVP to Bonnie Evans.
Lunch: to be provided by members. Please contact Bonnie Evans to volunteer bringing finger foods. email at kbemje@bellsouth.net


Contact: Susan Hill at 208-288-2099 or jacksue@cableone.net 


Contact: Ellen at hankandellen@bluemarble.net


Upcoming Meetings:
Contact: Raaquel rnunez@mpnresearchfoundation.org


Contact: Susan at smkennedy0@gmail.com

Massachusetts and greater New England

Upcoming Meeting: Friday, May 16th from 8-930 am
Location: Landmark Center
For more information or to RSVP please contact-Colleen Curley ccurley325@gmail.com

Contact: Colleen Curley at  massmpn@gmail.com 
On Twitter: https://twitter.com/MassMPNSupport


Contact: Ann Brazeau at abrazeau@mpnadvocacy


Contact Cristina at corozco11@cox.net

New Mexico
ABQ MPN Support Group NEXT Mtg Info:
New Mexico - 1/24/2015 - 10:15
LaChantilly French Café, in the back...
In Hoffmantown. SOUTH side Menaul at WYM & Menaul; If turn South from Menaul into driveway of Hoffmantown, you almost dead end into La Chantilly
Topics: Discuss next MPN Conference – 2/2015 in PHX: Personal Updates, Research Data – Discussion

Albuquerque Contact: abq_mpn@yahoo.com

New York

New York City
Contact: sapla@aol.com

North Carolina

Contact: Janice at jcreed@roadrunner.com
Upcoming meeting: Saturday June 7th, 2pm.
Note: Dr. Reeves from UNC Cancer Hospital will be our speaker. Dr. Reeves was with Mayo in internal medicine and became so intrigued with MPNs he came to UNC to complete fellowship in oncology and hematology and now wants to focus on on MPN treatment, research and patients.


Akron / Cleveland
Contact: Jay Schmitt at ohiompd@sbcglobal.net

Contact: Judy at judyMPN@yahoo.com
Upcoming Meetings: New Group is forming

Cincinnati, SW Ohio, NE Kentucky, & SE Indiana
Contact: Rebecca Lubitz rebeccalub@aol.com / 513-793-3179


Upcoming: MPN Meeting, March 28, 2015 from 1 to 3 pm at Huntingdon Valley Library, 625 Red Lion Rd., Huntingdon Valley, PA.
Contact: Marie at mtomp57083@comcast.net



Pittsburgh MPN Support Group Meeting
next THURSDAY, March the 19th, 6:30PM to 8 PM, 

Our House ( formerly Gilda’s Club of Western PA)
2815 Smallman Street, Pittsburgh, PA
Contact: Jean Diesch <diesch@consolidated.net>


Puerto Rico

San Juan
Contact: Maribel & Michael Rey, P.O. Box 364885, San Juan, PR 00936

South Carolina

Contact: Janice at jcreed@roadrunner.com
Upcoming meeting: Saturday June 7th, 2pm.
Note: Dr. Reeves from UNC Cancer Hospital will be our speaker. Dr. Reeves was with Mayo in internal medicine and became so intrigued with MPNs he came to UNC to complete fellowship in oncology and hematology and now wants to focus on on MPN treatment, research and patients.

Contact: Leslie at lesliedispensaperlman@yahoo.com


Contact: Charlie Neilsen at charlienielsen@aol.com

Dallas / Ft. Worth
Contact: karen-stern@sbcglobal.net


Contact: Seattle MPD Yahoo Group here 
Upcoming Meetings: Seattle Support Group Meeting will be held next Sunday Jan 25th at 2pm Moctezuma’s Mexican Restaurant
1150 Southcenter Mall
Tukwila, WA 98188
Email me at humblekids@msn.com or just show up.


Group still meets quarterly but the next scheduled meeting is:
Sunday January 25th 1-2:30pm
Crowne Plaza Hotel, Wauwatosa, WI
Contact Allison Spitzer for more details: Allison.Spitzer@lls.org

Outside the U.S.


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


This Patient meeting is in Belgium and will be on 29th January 2015
ALTE-SMP, a French MPN patient group with Belgian representatives, organizes a patient meeting the
Thursday before the BHS (29th of January) with the help of the BHS MPN committee and support from the BHS.
The meeting will take place at the Dolce, La Hulpe, from 09.00 to 12.30

This is a link.
For more inforation:altebelgium@alte-smp.org or contact@alte-smp.org)

Saskatoon, Saskatchewan
Contact: Gordon Walz at g.walz@sasktel.net

Edmonton, Alberta

Contact: Cheryl at cap@interbaun.com or 780-940-6569

Hamilton, Ontario (Including Toronto, S. Ontario, Western New York)

MPN Ontario Patient Support Group meeting: it is scheduled for January 17th, 2015 9:30 am to noon in Hamilton, Ontario. The speaker will be Dr. Brian Leber, a hematologist at Juravinski Cancer Centre with a special interest in MPNs. He will provide an update on the state of MPN research and treatment and answer our questions.
Contact: mpnontario@gmail.com or call John at 905-892-8238 OR Donna at 905-389-1278

Vancouver, BC

Blood Cancer Education Event:
Managing Your Fatigue, Updates, and More!
Date: Saturday, November 29, 2014
10:00 -12:00 pm for lectures and discussion groups, and
1:00 - 3:00 pm for Art and Healing Workshop

Location: Langara College, 100 West 49th Avenue, Vancouver, BC Room A136a
Guests: Alison Hoens, Physiotherapist, Dr. Cindy Toze, Hematologist, Lee Crawford, Registered Clinical Counsellor, Registered Art Therapist

Contact: Lisa at mpdvancouver@gmail.com


A support group is forming. Visit www.mpd.tel for more details.

Contact: MPD-Netzwerk@yahoogroups.de
Upcoming meetings: Announced through their Yahoo group, found here


Patient group meeting on June 7 at 17:30-20:00 in Shinagawa, Tokyo.
Contact: Kaori Taki  at patchleojp@yahoo.co.jp

MPN booklet for patient education (Japanese)                                                                                                                                                                Please go the patient supoort group website  for more information:http://mpn-japan.org

Japan (English speaking)
Contact: Ira Wolf at irawolf@aol.com

The Netherlands
Contact: MPD Stichting at info@mpd-stichting.nl or 088-0074-300

Contact: Peter at MPDSpainPacientes@gmail.com

United Kingdom
Upcoming meetings and forum found here

Contact: info@mpdvoice.org.uk
Upcoming meetings: May be found here


Contact: info@mpdvoice.org.uk


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.

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.

Facebook Women with Essential Thrombocythemia
Private group for women living with ET

Facebook MPN Interferon Forum
This forum is dedicated to MPNs and how interferon relates to their treatment, evolution, and future directions. It is open to anyone taking interferon, considering interferon, family members of those with MPNs who want to discuss interferon for treating any MPN.

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




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