Rare Disease Advocacy Summer

Summer is here and Rare Across America has a unique opportunity to connect Members of Congress with their constituents who are living with a rare disease such as Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Their program sets up meetings with advocates and Members of Congress or their staffers for a discussion on something YOU know well: what it is like to live with an MPN and what Congress could possibly do to help. 

No experience is necessary, and Rare Across America will prepare and train you for these meetings. Remember: no one knows your experience as a person with an MPN better than YOU! By connecting with your member of Congress you give a voice to the hundreds of thousands of people living with an MPN nationwide. 

You must sign up before July 3rd to take advantage of this opportunity: https://www.votervoice.net/mobile/EveryLife/1/Events/1197/Register

From federal funding for cancer research, to access issues with regards to medications and your experiences with Medicaid, Medicare or other insurance, YOU are the expert and have something of great value to bring to these conversations. I hope you take the chance to connect with your Member of Congress. If you do, please let us know about it! 

Author: Michelle Woehrle

Michelle Woehrle joined the MPN Research Foundation in 2007 after being inspired by their mission to fund research that will improve the lives of people living with the rare blood cancers PV, ET and MF. In 2015 she was promoted to Executive Director. She has assisted with the expansion of the grants program, grassroots initiatives to connect with more patients internationally and optimize operations for the Foundation.

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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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