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 email@example.com or 312-683-7249
In-person MPN Patient Support Groups
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 firstname.lastname@example.org or 312-683-7249 to discuss options.
Contact: Kathy VanMeter at email@example.com or by phone at 623-326-2456
Contact: Ron Anderson at firstname.lastname@example.org
Upcoming meetings: September 26th 11am to 3pm.
Cancer Support Community Benjamin Center (CSC) :1990 South Bundy Drive Suite 100 Los Angeles, CA 90025
Contact: Lindy: email@example.com
Contact: Antje Hjerpe firstname.lastname@example.org
San Francisco - Bay Area
Contact: Susan at Susanklepper@hotmail.com
Contact: Mabel at email@example.com 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 firstname.lastname@example.org
Contact: Natalie at 727-258-1115
Contact: Bonnie Evans at email@example.com or 404-771-0010
Contact: Susan Hill at 208-288-2099 or firstname.lastname@example.org
Contact: Ellen at email@example.com
Upcoming Meetings: September 10, 2015-Gilda's Club Chicago.@6-8pm
Contact: Raaquel firstname.lastname@example.org
Contact: Susan at email@example.com
Massachusetts and greater New England
Contact Cristina at firstname.lastname@example.org
Albuquerque Contact: email@example.com
Contact: Judy at judyMPN@yahoo.com
Upcoming Meetings: New Group is forming
Cincinnati, SW Ohio, NE Kentucky, & SE Indiana
Contact: Rebecca Lubitz firstname.lastname@example.org / 513-793-3179
June 8 from 11 am to 1 pm at Gilda House -200 Kirk rd. Warminster,PA 18974.
Contact: Marie at email@example.com
Pittsburgh PA Support Group Meeting
Tuesday, July 21, 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
Contact: Maribel & Michael Rey, P.O. Box 364885, San Juan, PR 00936
Contact: Janice at firstname.lastname@example.org
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 email@example.com
Contact: Charlie Neilsen at firstname.lastname@example.org
Dallas / Ft. Worth
Contact: Seattle MPD Yahoo Group here
Email me at email@example.com or just show up.
Group still meets quarterly but the next scheduled meeting is:
Contact Allison Spitzer for more details: Allison.Spitzer@lls.org
Outside the U.S.
Contact: Ken Young firstname.lastname@example.org or go here to be added to the mailing list for MPD Australia.
Upcoming meetings: Announced through mpd-oz website
This is a link.
For more inforation:email@example.com or firstname.lastname@example.org)
Contact: Gordon Walz at email@example.com
Contact: Cheryl at firstname.lastname@example.org or 780-940-6569
Hamilton, Ontario (Including Toronto, S. Ontario, Western New York)
Contact: email@example.com or call John at 905-892-8238 OR Donna at 905-389-1278
Contact: Lisa at firstname.lastname@example.org
Patient group meeting on Tokyo on June 6 at 17:30-20:00 in Shinagawa, Tokyo.
Contact: Kaori Taki at email@example.com
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 firstname.lastname@example.org
Contact: MPD Stichting at email@example.com or 088-0074-300
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