When you or a loved one receives a diagnosis for a serious medical condition, it is natural to feel overwhelmed and numb. Then you want to learn all you can as fast as you can. The questions are endless and you can make yourself crazy wondering if you are even asking the right questions.
Give yourself a break. You don’t need to know everything. Just know how to find the information you need when you need it.
The organizations and support groups listed here are for your information and exploration.
You will find that on-line support groups for various medical conditions vary widely in their degrees of expertise, culture, and overall personality. Most are listservs and Facebook groups are managed by patients or caregivers who are volunteers ~ they give countless hours to keep the communications flowing, while managing their own lives.
Myeloproliferative Neoplasms (MPN) Information & Support
MPNSupport.com Check out this on-line version of “yellow pages” (remember those?) of excellent resources curated by MPN patients for MPN patients. Disclosure: I am the administrator of the site because I write down a series of websites each time I meet someone newly diagnosed with PV, ET, or MF.
MPN Research Foundation founded by a Polycythemia Vera patient, this nonprofit foundation raises money and funds research specifically targeting Essential Thrombocythemia, Polycythemia Vera, and Myelofibrosis. The website has current helpful information for patients, too.
MPN Education Foundation this nonprofit organization organizes a large MPN Patient Symposium every two years at the Mayo Clinic in Scottsdale, Arizona. It’s leaders also manage the MPN listserv at ACOR (see below). Many of the conference presentations are available on-line or for purchase on DVD.
MPN Forum Researched, written, and produced by MPN patients, the MPN Forum covers real-time topics of interest to people living with MPNs. It also features an “Ask the Experts” resource where you can pose questions to top medical and research experts in our field.
MPN Advocacy & Education International this organization holds day-long symposia around the United States for MPN patients and health care providers who work with MPN patients. The website contains a lot of current information regarding research, clinical trials, and patient support. There is also contact information for MPN Support Groups throughout the United States, the UK, Australia, and others.
On-line Support Groups
Subscribe (it’s free!) to this listserv hosted by ACOR (Association of Cancer Online Resources):
www.listserv.acor.org and subscribe to MPN-NET@listserv.acor.org The administrators are long-time MPN patients who devote many of their waking hours to responding to queries, providing updates on scientific news, and organizing the bi-ennial MPN Patient Symposium at the Mayo Clinic Scottsdale, in Arizona.
If you are on Facebook, there are private groups that you might find helpful. You can request to “join” the groups (typically must say a bit about why you are interested). Each has its own “feel” based on the tone set by the administrators.
- Myelofibrosis Private Support Group
- Myelofibrosis Later State Private Support Group Trials vs SCT
- Polycythemia Support Group
Bone Marrow & Stem Cell Transplant Resources
BMT Infonet: provides a wide range of information and links to related sites, like the latest information on transplant centers. They have patient support programs, too.
Be the Match: this is the national coordinating registry of blood & marrow donors for the United States. When a patient needs to find a matching unrelated donor, all queries go through Be the Match’s National Marrow Donor registry. Be the Match also provides timely educational materials to transplant patients who register at key intervals before, during, and after the transplant.
nmbtLink: the National Bone Marrow Transplant Link provides information and personalized support services to help with the social and emotional challenges of the bone marrow/stem cell transplant process.
The Bone Marrow Foundation : Offers financial assistance and free support services to marrow/stem cell transplant patients and their families. The Lifeline Fund provides financial assistance to help cover the costs of transplant-related expenses. A One to One Fund can be created for a specific patient; it is a simple, cost-effective way for a patient’s family, friends, and community to raise money on a patient’s behalf with all money raised going directly to their benefit. All donations are tax deductible.
Health Resources & Services Administration (HRSA)
The US Department of Health & Human Services has HRSA data on Blood Cell Transplant.
To Register More Donors
Organize a ‘swab drive’ to build the registry of healthy people willing to donate their stem cells or marrow if called upon. There are two large national organizations in the US that register donors and many other registration groups that target donors of specific ethnic backgrounds.
Delete Blood Cancer: DKMS Delete Blood Cancer is the second largest registry in the US and is linked to the National Marrow Donor registry managed by Be the Match.
Be the Match: Be the Match has offices across the country and will help run swab drives where there is an active volunteer base to help bring out donors.
Genny’s Hope Foundation: Based in Colorado, Genny’s Hope Foundation helps people put together swab drives in their communities. Genny’s Hope partners with Be the Match and Delete Blood Cancer, and others with the goal of adding 1,000,000 people to the donor registry.