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unite@thehill advocacy day 05/06/19

Children and service animals are welcome. 


Public transportation available to capitol hill at the expense of the participant.


One way transportation and parking are available from the Hilton Garden Inn in Rockville, MD for a flat fee of $20 per person. Must purchase seat by 04/15/2019.


   Join us as we storm Capitol Hill to make a difference for people living with Chiari malformation, syringomyelia, dysautonomia, Ehlers-Danlos syndrome, and many other related disorders.

   In the past, our partners and allies united at Capitol Hill with you to make a difference for people living with Chiari mal-formation, syringomyelia, Ehlers-Danlos syndrome, dysautonomia and many other related disorders… and it seems like Congress is really listening! Since we began our quest with the first unite@the hill event, Congress has passed important legislation like the 21st Century Cures Act which promises to fund more innovative medical research, especially for debilitating neurological disorders which are often overlooked for governmental funding.


   In 2018, we asked Congress re-authorize the Patient-Centered Outcomes Research Institute (PCORI), which puts patients and caregivers in the driver's seat-- making them actively involved in the medical research that will one day help them!

   This year's policy priorities are being ironed out and all Neuro Connect Summit attendees will be trained how to accurately share information with their political representatives and drive real change for families affected by these disorders, everywhere!

Check out all the fun we had in 2018!