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Be an Advocate for Rare Disease Week

Every year, patients and caregivers from the rare disease community gather in Washington, DC to learn how to work effectively with Congress and federal agencies. Last year, over 150 patient organizations were represented.

This year’s Rare Disease Week will take place on February 25-March 1, 2018. Rare disease patients, caregivers, and other advocates including researchers and doctors are invited to join. The event is free to attend, but advanced registration is required. Registration must be done online by January 3, 2018. Travel stipends are available. Applications for travel stipends will be accepted through December 10. Recipients in Maryland will receive $400, and recipients in Alaska, Hawaii and Puerto Rico will receive $1000. Recipients in the rest of the continental US will receive $800. Patients, caregivers, and other advocates can apply at this link. The following states have few, or no, applicants: AK, AR, CO, DE, HI, IA, ID, KS, KY, LA, ME, MN, MO, MT, NE, NH, NM, NV, OR, PR, RI, SC, SD, UT, VT, and WY. People who did not receive a stipend for Rare Disease Week in 2016 or 2017 will receive priority to enable and encourage new advocates to attend. There is a limit of one stipend per family (patient + spouse, patient + parent/sibling, patient + caregiver, etc.).

To learn more about Rare Disease Week, the full schedule, or to register, go to this link.

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Date Created: December 4th, 2017
Last Updated: December 4th, 2017

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