Welcome to the MPN Community Support site!

.MPNSupportBouy

“You have Essential Thrombocythemia”

“You have Polycythemia Vera”

“You have Primary Myelofibrosis”

If you’ve received a diagnosis of one of these Myeloproliferative Neoplasms (MPN), you are in good company. Although rare chronic blood cancers, we have a vibrant community of people around the world living with these invisible illnesses.

We don’t reinvent the wheel.  This site links to reliable resources for you:  

  • learn about the disease,
  • become knowledgeable about current treatments, and
  • aware of the science and clinical trials advancing us toward cure.
  • Along the way, we share resources for your daily life (because life keeps on even if MPN may stop you in your tracks).  

We also link to the incredible network of patient-led support resources, so you can connect with others living with the same rare disease.    

This site is managed by MPN patients for MPN patients and updated as new information becomes available.  You are invited to share resources that you found helpful!

1st Things First:

  1.  Consult with a MPN expert hematologist.
  2. Learn as much as you can about your diagnosis. (from sources below)
  3. Remember these are chronic, manageable diseases. 

Find a Hematologist experienced with MPN

Because Essential Thrombocythemia (ET), Polycythemia Vera (PV), and Myelofibrosis (MF) are rare, many hematologists are not experienced in treating them. You must seek current information and share with your doctors. New MPN patients are encouraged to consult with a Hematologist who is expert in these diseases. With an expert assessment and treatment recommendations, you can work with your local hematologist in monitoring the disease and side effects. Researchers, clinicians, and patients are working together to move science along with hopes better treatments and cures can be found.   The list linked below was sourced from patients around the world.

The List of Patient-Recommended Hematologists

The Basics:  Education & Research

Learn as much as you can about your diagnosis. These organizations have the latest information. Share what you learn with the important people in your life.

MPN Research Foundation  http://www.mpnresearchfoundation.org/

The MPN Research Foundation was founded by patients, for patients with a single goal: to stimulate original research in pursuit of new treatments — and eventually a cure — for polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF), known collectively as myeloproliferative neoplasms (MPN). It funds basic science research that holds promise for further knowledge in MPN functioning. It also has a lot of educational information for patients and their loved ones.

MPN Education Foundation      www.mpninfo.org

The MPN Education Foundation provides information, education and support to MPN patients and fosters doctor/patient/researcher networking. It holds a bi-ennial MPN Patient Conference with Mayo Clinic Scottsdale in February 25-26, 2017.  This volunteer run organization also hosts and administers MPN-NET, a global online support and education listserv for patients, families, researchers and physicians. Go to:  http://listserv.acor.org/   subscribe (it’s free!) with email to listserv@listserv.acor.org

MPNforum Magazine         http://www.mpnforum.com

MPNforum Magazine and its companion MPN Quarterly Journal are open source publications that report the latest international MPN news, science, and opinion on pressing issues affecting MPN patients.  MPNforum is managed and staffed by patients and friends with the volunteer participation of scientists, hematologists, and healthcare providers. No subscription is required, but subscribers (no fee, just sign up with email address) get special bulletins, early notice of publication, plus the option to join the private MPNforum Facebook discussion group).

MPN Advocacy and Education International     www.mpnadvocacy.com

MPN Advocacy & Education International brings MPN experts to local communities in interactive symposia.  Videos of the presentations are available for viewing on the website. Their Advocacy Initiatives include:  Women and MPN, Vietnam Veterans and MPN, and Pediatric MPN.  MPN A&E also assists local MPN Support Group leaders with speakers, outreach, and materials.  The website lists many resources and they post articles of interest to patients.  Videos of many of their conference presentations are also online.

MPN Voice  www.mpnvoice.org.uk

MPN Voice is a UK based web site and team that provides information and support to those diagnosed with a myeloproliferative neoplasm (MPN). MPN Voice has members across the UK and worldwide. It organises regional patient forums in the UK and co-ordinates a Peer Support programme to allow people with MPNs to contact other more experienced patients.

National Cancer Institute   Cancer.gov:  http://www.cancer.gov/types/myeloproliferative 

US National Cancer Institute provides comprehensive cancer information including the latest in research.

Leukemia & Lymphoma Society     www.lls.org

LLS is the largest voluntary health agency dedicated to blood cancer and funds lifesaving blood cancer research around the world. The First Connection program facilitates peer support by matching patients with cancer survivors trained in peer support.

Patient Power     www.patientpower.info

Patient Power interviews clinicians and researchers and shares the videos on line so patients can get the latest information in the comfort of their own homes.

NORD – National Organization for Rare Disorders     www.rarediseases.org

The National Organization for Rare Disorders is committed to the identification, treatment and cure of rare disorders through education, advocacy, research and patient services.

MPD-RC         
The MPD Research Consortium            www.mpd-rc.org

A National Cancer Institute supported project involving 50 International MPN Centers in the United States, Canada, Europe and Israel. It is a resource for both patients and physicians focusing on advancing the science and therapy of myeloproliferative neoplasms.

Cancer Research & Treatment Fund (CRT)     www.crt.org

CRT funds clinical research on MPN and related blood cancers, primarily through Weill Cornell Medical College. Founded by Dr. Richard T. Silver in 1948, CRT has invested more than $10 million in clinical research.

 

 

Questions, additions, corrections contact:  mpnbuddies@gmail.com

13 comments on “Welcome to the MPN Community Support site!
  1. kathy van meter says:

    This is a thing of beauty. Thanks to all who devoted their time to this labor of love. Peace……

  2. Sharon Britt Lewis says:

    What a great idea. I hope the information shared helps everyone.

  3. Bonnie Kaye Evans says:

    Thank you. I am ready to help when someone is in need

  4. Audrey Bittman says:

    This is an amazing idea, with so many helpful resources. Just wonderful!

  5. KAREN K. COLTRANE says:

    Thank you!!

  6. Jane Frantz says:

    Looks wonderful! Thank you all!

  7. Beatrice Larroque says:

    What a wonderful idea Zhen! And it is so nice to have all the links listed together. Thank you for constantly looking for ways to make our lives easier.

  8. Julie Libon says:

    This looks amazing! Thank you for setting up this extremely helpful and informative site.

  9. Jodi Ricklin-Matheson says:

    Thank you so much!

  10. Trish Epperly says:

    Finally, understanding among friends!

  11. Anne Zeifman, D.V.M. says:

    wow, what a great sight.Thanks so much for all the hard work.

  12. Jeanette calatino Murphy says:

    Thank you. I know there will be a cure.

  13. Diane Dukette says:

    Thank you very much!

Comments are closed.

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