International MPN News, Science & Opinion

MPN Community Support Portal

Real help — when you most need it.

The MPN Community Support group  is a group of patients volunteering to help fellow MPN patients find their way through the gnarly financial and social costs of treatment

Meeting the non-medical costs of treatment such as travel, childcare, short-term lodging, etc. as well as finding sources of nonprofit, private and government support for major medical expenses is a challenge all too familiar to MPN patients.

Clearly MPNforum and other patient support groups are more of an informational and referral resource than a source for significant aid.  There are proposals to  build a process and capital reserve to make direct grants in future so if you have any thoughts or want to volunteer, just jump on in.  Leave a comment here or write: Jane Frantz is the  chief financial officer.

Along with providing counseling, Diane Blackstock suggested the MPN Community Support Portal publish a permanent page  of resources. 

Here’s the MPN Community Support list. Hopefully, it will continue to grow and elicit comment and evaluation from patients who have used these resources.

 Fund-raising (help it creating a fundraiser, no information on costs) | Easiest Online Fundraising. Raise Money by Sharing Your Story.


For coordination and communication of care  (misc.)  (A consumer lender with a cancer living benefit program)

The basics



Investigational drugs

There are times we or a loved one need access to investigational drugs. These are meds that   are promising but not yet approved by the FDA.  Commonly known as compassionate use of meds, the FDA provides a path to help acquire the drugs under its “Expanded access” program. Here are two helpful sites, one laying out the ground-rules, the other providing the necessary application information.

Help with co-pays and meds

For assistance with travel




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