Wednesday, February 22, 2017

Rare Disease Week on Capitol Hill: February 27, 2017 – March 2, 2017



Want your voice heard? Submit your story TODAY!
Rare Disease Week on Capitol Hill: February 27, 2017 – March 2, 2017
Rare Disease Week on Capitol Hill brings rare disease community members from across the country together to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. Submit your stories TODAY to let Congress know about your experiences with this rare disease; how it has impacted your life and let them know which issues are most important to you.
You can submit your personal perspective http://rareadvocates.org/rdw-old/patientstories/ to be hand-delivered to your Representative and Senators on Lobby Day.
The deadline to submit perspectives is Sunday, February 19th.
The registration to attend in person in closed, however, you can participate remotely by watching the livestream of the Legislative Conference on Tuesday, February 28th, from 9am to 5pm ET. To register for the free live stream register here: http://action.everylifefoundation.org/…/eve…/common/public/… A link to the live stream will be emailed to all registrants the morning of the event.
Submit your story TODAY!
"Remember....Research is the key to your cure!"

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Organizations around the world unite for Porphyria links

The following organizations have websites in English The American Porphyria Foundation has a very extensive website, including a section ...