Return to flip book view
Join Hundreds of Rare Disease AdvocatesMake a Difference• Meet fellow rare disease advocates• Learn about policy impacting you• No advocacy experience required• All events are FREE for advocates• All event venues are ADA compliant Registration Opens January 6, 2025Contact Kendly Jones kjones@everylifefoundation.orgREGISTRATION OPENS JANUARY 6, 2025Questions?#RAREDC2025 RAREADVOCATES.ORG/RDW1012 14th St, NW, Suite 500, Washington, D.C. 20005(202) 697-RARE (7273) POWERED BY THE EVERYLIFE FOUNDATION#RareDC2025@RareAdvocates
• Rare Reels Rare Reels is a unique event with a kick-off reception for Rare Disease Week to celebrate the art and craft of storytelling through lm. During the event, we will highlight a selection of documentaries that showcase important, diverse stories of and for the rare disease community. Trailers for each selected lm will be shown with a panel discussion to follow. • Legislative Conference Advocates will learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff. • Young Adult Rare Representatives (YARR) Meetup YARR Members will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of individuals aged 16-30 who are building the next generation of rare disease advocates. MON 24 TUES 25 • Hill Meetings Advocates put what they learned at the Legislative Conference to work during meetings scheduled for them with Members of Congress and staff. • Rare Disease Congressional Caucus Brieng Convenes policy experts and rare disease stakeholders to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community. Lunch will be served. • Rare Artist Reception Awardees from our Rare Artist contest exhibit their art and share their story with Members of Congress, Congressional staff, and advocates.WEDS 26 Schedule of Events Rare Disease Week on Capitol HillAll advocates are responsible for making their own travel arrangements to Washington, D.C., including hotel reservations. Travel reimbursement application dates:• Application opens: September 23, 2024• Application closes: November 8, 2024• Notify applicants on status: December 6, 2024 Reimbursement recipients will be required to submit air/train travel and hotel/lodging receipts to RDLA for tax purposes.To apply for travel reimbursement, please visit:rareadvocates.org/rdwTravel ReimbursementsREGISTRATION OPENS JANUARY 6, 2025. FOR MORE INFORMATION VISIT: RAREADVOCATES.ORG/RDW
• Rare Reels Rare Reels is a unique event with a kick-off reception for Rare Disease Week to celebrate the art and craft of storytelling through lm. During the event, we will highlight a selection of documentaries that showcase important, diverse stories of and for the rare disease community. Trailers for each selected lm will be shown with a panel discussion to follow. • Legislative Conference Advocates will learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff. • Young Adult Rare Representatives (YARR) Meetup YARR Members will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of individuals aged 16-30 who are building the next generation of rare disease advocates. MON 24 TUES 25 • Hill Meetings Advocates put what they learned at the Legislative Conference to work during meetings scheduled for them with Members of Congress and staff. • Rare Disease Congressional Caucus Brieng Convenes policy experts and rare disease stakeholders to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community. Lunch will be served. • Rare Artist Reception Awardees from our Rare Artist contest exhibit their art and share their story with Members of Congress, Congressional staff, and advocates.WEDS 26 Schedule of Events Rare Disease Week on Capitol HillAll advocates are responsible for making their own travel arrangements to Washington, D.C., including hotel reservations. Travel reimbursement application dates:• Application opens: September 23, 2024• Application closes: November 8, 2024• Notify applicants on status: December 6, 2024 Reimbursement recipients will be required to submit air/train travel and hotel/lodging receipts to RDLA for tax purposes.To apply for travel reimbursement, please visit:rareadvocates.org/rdwTravel ReimbursementsREGISTRATION OPENS JANUARY 6, 2025. FOR MORE INFORMATION VISIT: RAREADVOCATES.ORG/RDW
• Rare Reels Rare Reels is a unique event with a kick-off reception for Rare Disease Week to celebrate the art and craft of storytelling through lm. During the event, we will highlight a selection of documentaries that showcase important, diverse stories of and for the rare disease community. Trailers for each selected lm will be shown with a panel discussion to follow. • Legislative Conference Advocates will learn about the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff. • Young Adult Rare Representatives (YARR) Meetup YARR Members will gather following the Legislative Conference to discuss the day’s events. YARR is a highly motivated group of individuals aged 16-30 who are building the next generation of rare disease advocates. MON 24 TUES 25 • Hill Meetings Advocates put what they learned at the Legislative Conference to work during meetings scheduled for them with Members of Congress and staff. • Rare Disease Congressional Caucus Brieng Convenes policy experts and rare disease stakeholders to educate Congressional staff, the public, and advocates on issues of importance to the rare disease community. Lunch will be served. • Rare Artist Reception Awardees from our Rare Artist contest exhibit their art and share their story with Members of Congress, Congressional staff, and advocates.WEDS 26 Schedule of Events Rare Disease Week on Capitol HillAll advocates are responsible for making their own travel arrangements to Washington, D.C., including hotel reservations. Travel reimbursement application dates:• Application opens: September 23, 2024• Application closes: November 8, 2024• Notify applicants on status: December 6, 2024 Reimbursement recipients will be required to submit air/train travel and hotel/lodging receipts to RDLA for tax purposes.To apply for travel reimbursement, please visit:rareadvocates.org/rdwTravel ReimbursementsREGISTRATION OPENS JANUARY 6, 2025. FOR MORE INFORMATION VISIT: RAREADVOCATES.ORG/RDW
Join Hundreds of Rare Disease AdvocatesMake a Difference• Meet fellow rare disease advocates• Learn about policy impacting you• No advocacy experience required• All events are FREE for advocates• All event venues are ADA compliant Registration Opens January 6, 2025Contact Kendly Jones kjones@everylifefoundation.orgREGISTRATION OPENS JANUARY 6, 2025Questions?#RAREDC2025 RAREADVOCATES.ORG/RDW1012 14th St, NW, Suite 500, Washington, D.C. 20005(202) 697-RARE (7273) POWERED BY THE EVERYLIFE FOUNDATION#RareDC2025@RareAdvocates
Join Hundreds of Rare Disease AdvocatesMake a Difference• Meet fellow rare disease advocates• Learn about policy impacting you• No advocacy experience required• All events are FREE for advocates• All event venues are ADA compliant Registration Opens January 6, 2025Contact Kendly Jones kjones@everylifefoundation.orgREGISTRATION OPENS JANUARY 6, 2025Questions?#RAREDC2025 RAREADVOCATES.ORG/RDW1012 14th St, NW, Suite 500, Washington, D.C. 20005(202) 697-RARE (7273) POWERED BY THE EVERYLIFE FOUNDATION#RareDC2025@RareAdvocates