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: MPNfund@gmail.com. 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

http://www.giveforward.com/ (help it creating a fundraiser, no information on costs)

Rally.org | Easiest Online Fundraising. Raise Money by Sharing Your Story.

http://www.youcaring.com

http://www.bmtinfonet.org/resources#Fundraising

 

For coordination and communication of care

http://www.caringbridge.com

http://lotsahelpinghands.com  (misc.)

http://www.lifecreditcompany.com  (A consumer lender with a cancer living benefit program)

The basics

http://www.MPNresearchfoundation.org

http://www.lls.org

http://www.lls.org/#/diseaseinformation/getinformationsupport/financialmatters/travelassistance

https://bethematch.org/for-patients-and-families/getting-a-transplant/planning-for-transplant-

costs/financial-assistance-for-transplant-patients/

http://www.fda.gov/ForPatients/default.htm.

http://www.patientpower.info/video/finding-financial-assistance-programs-after-a-cancer-diagnosis

http://mpnadvocacy.comhttp://supportorgs.cancer.gov/home.aspx

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

https://www.incytecares.com/jakafi-co-pay-assistance.aspx

http://www.cancercare.org/publications/62-sources_of_financial_assistanceh

http://www.lls.org/#/diseaseinformation/getinformationsupport/financialmatters/

http://mpnadvocacy.com

http://supportorgs.cancer.gov/home.aspx

http://www.cdfund.org/

http://www.panfoundation.org/

http://www.cleaningforareason.org/

For assistance with travel

http://www.angelflight.com/

 

 

 

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