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 us.
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 email@example.com or 312-683-7243 to discuss options.
Contact: Kathy VanMeter at firstname.lastname@example.org or by phone at 623-326-2456
Contact: Ron Anderson at email@example.com
Upcoming meetings: Sunday - February 9, 2014 – 1 pm to 4:30 pm
Topic: MPN updates from ASH Annual Meeting
Contact: Lindy: firstname.lastname@example.org
Contact: Antje Hjerpe email@example.com
San Francisco - Bay Area
Contact: Susan at Susanklepper@hotmail.com
Contact: Mabel at firstname.lastname@example.org 303-764-8523
Location:Kaiser Permanente -5pm
2045 Franklin St.
Heyers Conference Room
Denver, CO 80205
District of Columbia
WHEN: Saturday, March 8, 2PM to 4PM
WHERE: Cafe Intermezzo
4505 Ashford Dunwoody Rd
Dunwoody, GA 30346
Order a la carte for lunch and they have some incredible desserts. Each person responsible for their own order.
RSVP to Bonnie Evans, email@example.com, or 404.771.0010
Contact: Susan Hill at 208-288-2099 or firstname.lastname@example.org
Contact: Susan at email@example.com
Massachusetts and greater New England
Boston-Patient support meeting with Dr. Mullally is happening at the Landmark Center on Friday, May 16th from 8-930 am.
Registration begins at 8am and the program will begin at 8:30 am.
For more information please contact-Colleen Curley -firstname.lastname@example.org
Contact: Colleen Curley at email@example.com
On Twitter: https://twitter.com/MassMPNSupport
Contact: Ann Brazeau at abrazeau@mpnadvocacy
Contact Cristina at firstname.lastname@example.org
Next Meeting:Sat. March 8, 2014
Location: La Chantilly French Cafe. in the back... In Hoffmantown. SOUTH side Menaul at WYM & Menaul; If turn South from Menaul into driveway of Hoffmantown, youalmost dead end into La Chantilly
Topics: Personal Updates + Guest Speaker ~ Dr. Jesse Andreas, Dr. of Oriental Med,
Albuquerque Contact: email@example.com
New York City
Contact: Janice at firstname.lastname@example.org
Akron / Cleveland
Contact: Jay Schmitt at email@example.com
Cincinnati, SW Ohio, NE Kentucky, & SE Indiana
Contact: Rebecca Lubitz firstname.lastname@example.org / 513-793-3179
Upcoming: Saturday, May 4
1-3 PM at the Hundington Public Library
Contact: Marie at email@example.com
Pittsburgh Support Group Meeting, March 19th and May 21, 2014
6:30 – 8PM,
Gilda’s Club of Western PA
2815 Smallman Street, Pittsburgh, PA
Npgh.firstname.lastname@example.org or 724-449-1174
Contact: Maribel & Michael Rey, P.O. Box 364885, San Juan, PR 00936
Contact: Janice at email@example.com
Upcoming meetings: To be announced
Contact: Leslie at firstname.lastname@example.org
Contact: Charlie Neilsen at email@example.com
Dallas / Ft. Worth
Contact: Seattle MPD Yahoo Group here
Upcoming Meetings: To be announced
Location: Our usual location which is now called Don Eduardo' s restaurant, 1823 Eastlake Ave. E. Ask for the MPN group. We will catch up with each other and discuss current issues from the MPN conference
Racine (Includes SE Wisconsin and NE Illinois)
Contact: Marge Blocks at firstname.lastname@example.org / 715-546-2807 Karen email@example.com
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
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 June 7 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.
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