"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.

Arizona

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



California

Los Angeles
Contact: Ron Anderson at ron.anderson77@gmail.com
Upcoming meetings: September 26th 11am to 3pm. 

Cancer Support Community Benjamin Center (CSC) :1990 South Bundy Drive Suite 100 Los Angeles, CA 90025



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

Colorado


Denver
Contact: Mabel at mabel.d.peters@kp.org 303-764-8523
Upcoming meetings: September 10, 2015
Location:Kaiser Permanente -5pm
2045 Franklin St.
Heyers Conference Room
Denver, CO 80205

 

District of Columbia

Contact: David at 55saveslives@gmail.com

Florida

Contact: Natalie at 727-258-1115


Georgia

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



Idaho

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


Indiana

Bloomington
Contact: Ellen at hankandellen@bluemarble.net

Illinois

Chicago
Upcoming Meetings: September 10, 2015-Gilda's Club Chicago.@6-8pm
Contact: Raaquel rnunez@mpnresearchfoundation.org

Kentucky

Contact: Susan at smkennedy0@gmail.com

Massachusetts and greater New England

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

Michigan

Lansing
Contact: Ann Brazeau at abrazeau@mpnadvocacy

Nevada

Contact Cristina at corozco11@cox.net


New Mexico

Albuquerque Contact: abq_mpn@yahoo.com

New York

New York City
Contact: sapla@aol.com

North Carolina

Contact: Janice at jcreed@roadrunner.com

Ohio

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

Columbus
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

Pennsylvania

Philadelphia
June 8 from 11 am to 1 pm at Gilda House -200 Kirk rd. Warminster,PA 18974.
Contact: Marie at mtomp57083@comcast.net

Pittsburgh

 Pittsburgh PA Support Group Meeting
Tuesday, July 16th, 2015
Time: 6:30 PM – 8:00 PM
Location: Our Clubhouse
(Formerly: Gilda’s Club of Western PA)
2816 Smallman Street, Pittsburgh, PA 15222
Free parking available, lot across the street.
RSVP: Jean at 724.831.0368 or

Email: mpn.pgh.sup@gmail.com
www.facebook.com/MPN.Pittsburgh.Support

Save the date for the next meetings:
Sept 17th,2015
Nov 19th,2015


 

Puerto Rico

San Juan
Contact: Maribel & Michael Rey, P.O. Box 364885, San Juan, PR 00936
maribel.rey@gmail.com

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.

Charleston
Contact: Leslie at lesliedispensaperlman@yahoo.com

Texas

Houston
Contact: Charlie Neilsen at charlienielsen@aol.com

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

Washington


Seattle
Contact: Seattle MPD Yahoo Group here 
Email me at humblekids@msn.com or just show up.


Wisconsin

Group still meets quarterly but the next scheduled meeting is:
Contact Allison Spitzer for more details: Allison.Spitzer@lls.org


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

Belgium

This is a link.
http://www.bhs.be/news/detail/patient-meeting-29th-january-2015
For more inforation:altebelgium@alte-smp.org or contact@alte-smp.org)
Canada

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)


Contact: mpnontario@gmail.com or call John at 905-892-8238 OR Donna at 905-389-1278

Vancouver, BC

Contact: Lisa at mpdvancouver@gmail.com

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

Patient group meeting on Tokyo on June 6 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

Spain
Contact: Peter at MPDSpainPacientes@gmail.com

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

 

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.

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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