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