MPN Support Groups

If you are seeking support and would like a safe place to meet other patients and caregivers, and learn more about your diagnosis, 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.  Please contact us at abrazeau@mpnadvocacy.com.

Click here for MPN Advocacy & Education International’s

Support Group Coordinator  Guidebook

Look for support groups in the following places:

United States

Arizona

Phoenix

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

Upcoming meeting: TBD

California

Los Angeles

Contact: Ron Anderson,  ron.anderson77@gmail.com

Upcoming meetings:

Location: Click here for details

R.S.V. P.

 

San Diego

Contact: Suzanne Forrest, suzannemforrest@yahoo.com

Upcoming meetings:

Location:

R.S.V. P. 

 

San Francisco – Bay Area

Contact: Susan, susanklepper@hotmail.com

Upcoming meetings:

  RSPV- 

Coachella Valley

Contact: Linda, suttonprescott@aol.com

Upcoming meetings: TBD

Colorado

Denver

Contact: Mabel, mabel.d.peters@kp.org

Upcoming meetings:

Location:

District of Columbia

Contact: David,  55saveslives@gmail.com

Upcoming: TBD

Florida

Contact:  Nick Vojnovic, nick.vojnovic@gmail.com or Bruce Jones,  dbrucejones@aol.com

Georgia

Atlanta

Contact: Bonnie Evans kbemje@bellsouth.net  or Marina Sampanes Peed,  laughatillness@gmail.com

Upcoming meetings:

Location:

R.S.V.P.-  

Idaho

Boise

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

Upcoming Meetings: November 14, 2nd Tuesday of every month  11:30 am.

Location: Gino’s Italian Restaurant, MacMillian and Ten Mile, Meridian, Idaho

Indiana

Bloomington

Contact: Ellen,  hankandellen@bluemarble.net

Upcoming meetings:

RSVP: For location details email hankandellen@bluemarble.net

Illinois

Chicago

Contact: Raquel, rnunez@MPNResearchFoundation.org or 312-683-7243

Upcoming meetings: TBD

Kentucky

Contact: Susan,  smkennedy0@gmail.com

Upcoming meetings: TBD

Massachusetts and greater New England


Michigan

Lansing

Contact: Ann Brazeau, abrazeau@mpnadvocacy.com or 517-899-6889

Upcoming:

RSVP:  Ann, abrazeau@mpnadvocacy.com

Nevada

Contact Cristina, corozco11@cox.net

Upcoming meetings: TBD

New Jersey

Contact:  Cheryl Bonder, info@marigoldhealthandwellness.com

Upcoming meetings:

Location:

New Mexico

Albuquerque

Contact: Alrene, abq_mpn@yahoo.com

Upcoming meeting: November 4, 10:15 am

Location:  Napoli Coffee  @  3035 Menaul Blvd NE,    

  [just West of Carlisle & Menaul.  in same shop cntr -JCPenny Home Store]

Discuss “The National Comprehensive Cancer Network (NCCN) guidelines for the management of polycythemia vera (PV) and essential thrombocythemia (ET) have been updated to create a more uniform system of management for healthcare providers to follow in clinical practice.”

 R.S.V.P.-abq_mpn@yahoo.com

New York

New York City

Contact: Jen Bealer at jen.bealer@gmail.com

Upcoming meetings:

contact Jen Bealer for details and to RSVP

North Carolina

Contact: Janice, jcreed@roadrunner.com

Upcoming meetings: TBD

Ohio

Akron – Cleveland

Contact: Jay Schmitt, ohiompd@sbcglobal.net

Upcoming Meetings: TBD

Location: Akron General Health & Wellness Center, 4125 Medina Rd., Akron, OH 44333

 

Columbus

Contact: Judy,  judyMPN@yahoo.com

Upcoming Meetings:

Cincinnati, SW Ohio, NE Kentucky, & SE Indiana

Contact: Rebecca Lubitz at rebeccalub@aol.com or 513-793-3179

Upcoming meetings: TBD

Oregon

Eugene

Contact:  Antje Hjerpe, jahjerpe@sbcglobal.net

Upcoming Meetings:

RSVP:  Email Antje for details, jahjerpe@sbcglobal.net

Pennsylvania

Philadelphia

Contact: Marie at mtomp57083@comcast.net

Upcoming meetings:

Location: Huntington Valley Library

R.S.V. P.   Marie-mtomp57083@comcast.net

Pittsburgh

Contact: Jean Diesch, mpn.pgh.sup@gmail.com or 724.831.0368

Upcoming meetings: November 16, 6:30-8

 Speaker:

Our Clubhouse
2816 Smallman Street
Pittsburgh, PA 15222

R.S.V. P.-  mpn.pgh.sup@gmail.com

Puerto Rico

San Juan

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

maribel.rey@gmail.com

Upcoming meetings: TBD

South Carolina

Contact: Janice,  jcreed@roadrunner.com

Upcoming meetings: TBD

Charleston

Contact: Leslie, lesliedispensaperlman@yahoo.com

Upcoming meetings: TBD-please contact Leslie for the next date/time.

Texas

Dallas – Fort Worth

Contact: Andrea Spica, Andrea926@sbcglobal.net

Upcoming Meetings:

R.S.V. P.- email Andrea for details,
andrea926@sbcglobal.net

Houston

Contact: Charlie Nielsen at charlienielsen@aol.com

Upcoming meetings: TBD

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 at klipluba@yahoo.com  or 262.552.7047

Upcoming meetings: TBD

 

Outside the U.S.

Australia

Contact: Ken Young info@mpd-oz.org or go here to be added to the mailing list for MPD Australia.

Upcoming meetings: TBD through mpd-oz website

Canada

Canadian MPN Network

Chair:  Cheryl Petruck

Contact: canadianmpnnetwork@gmail.com

780-940-6569

Saskatoon, Saskatchewan

Contact: Gordon Walz at g.walz@sasktel.net

Upcoming meetings: TBD

Edmonton, Alberta 

Contact: Cheryl at mpnalberta@gmail.com or 780-940-6569

Upcoming meetings: TBD

Hamilton, Ontario

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

Contact: mpnontario@gmail.com or call John at 905-892-8238

Upcoming meetings:

Location: Contact John, mpnontario@gmail.com

Topic Clinical Trials

Vancouver, BC

Contact: Lisa at mpdvancouver@gmail.com

Upcoming meetings: TBD

France

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

 

Germany

Contact : kontakt@mpn-netzwerk.de

Japan

Contact: Kaori Taki  at patchleojp@yahoo.co.jp

Upcoming meetings:

RSVP:  Contact Kaori for details, Shire Japan KK meeting room

MPN Brochure: Japanese

 

The Netherlands

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

Spain

Contact: Peter at MPDSpainPacientes@gmail.com

Upcoming meetings: TBD

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: TBD

Online 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.

MPN-Net

Includes an online support group (MPN-Net), answers to frequently asked MPN 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 2,000 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.