Earlier this year, hundreds of advocates representing every state gathered in Washington, DC for the Rare Disease Week Legislative Conference. Their energy and enthusiasm raised the roof, as they shared experiences and prepared to visit their legislators on Capitol Hill. What a difference a pandemic makes. We replaced our daily routines with the mostly quieter […]
https://rareadvocates.org/wp-content/uploads/2020/06/IMG_1811-e1591652902107.jpg11251500Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngGrant Kerber2020-06-10 11:12:282020-06-10 11:12:28RDLA and SmithSolve Launch Fast Forward for RARE
This summer, rare disease advocates across the country have the opportunity to meet with their federal legislators close to home in the state and district offices. You can make an impact on federal policy, share your rare disease story, and meet other rare disease advocates! Registration for Rare Across America is now open till July […]
https://rareadvocates.org/wp-content/uploads/2020/05/RAA-2020-Banner-e1588603090582.png7501056Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngShannon vonFelden2020-05-04 10:38:462020-05-04 10:38:46Register for Rare Across America
More than 900 patients and families from across the country attended Rare Disease Week on Capitol Hill 2020 from February 25th – 28th, an annual event hosted by the Rare Disease Legislative Advocates (RDLA). The Week featured events designed to educate and activate advocates and to foster relationships within the community. Advocates representing 227 patient […]
You are invited to join more than 800 advocates for Rare Disease Week on Capitol Hill 2020 from February 25th to 28th. Registration is now OPEN for all the events during this exciting and powerful week in Washington, DC. Rare Disease Week on Capitol Hill brings rare disease community members from across the country together […]
https://rareadvocates.org/wp-content/uploads/2016/05/Rare-Disease-Week-Logo-e1476291869228.png120144Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngShannon vonFelden2020-01-03 14:28:232020-05-04 10:40:28Registration Now Open for Rare Disease Week on Capitol Hill 2020
Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 25-28, 2020, rare disease advocates will […]
(Washington, D.C., December 5, 2019) Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases (ELF), presented RareVoice Awards to individuals whose public policy advocacy leadership is saving lives and providing hope to millions of children and adults who live with rare diseases. RDLA is committed to growing the patient advocacy […]
The Rare Disease Legislative Advocates (RDLA) today announced the 2019 RareVoice Awards patient advocate finalists. View the finalists. The RareVoice Awards is an annual celebration, now in its eighth year, to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government […]
Thank you to the nearly 600 rare disease advocates who participated in meetings with their federal legislators during the August recess this summer! There were 303 meetings with Members of Congress or their staff in 49 states plus the District of Columbia. This is our highest turnout yet for our in-district meetings program, Rare Across […]
https://rareadvocates.org/wp-content/uploads/2019/10/RAA_Wrapup-Email-Impage-10-2-19.png756945Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngShannon vonFelden2019-10-02 09:26:392019-10-02 09:26:39Congratulations Advocates on Over 300 Rare Across America Meetings!
We are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators. […]
https://rareadvocates.org/wp-content/uploads/2019/10/RDWCH-Travel-Stipends-graphic_box.png10801080Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2020/01/RDLA-logo-with-tag-white-rev.pngShannon vonFelden2019-10-01 11:31:142019-10-01 11:31:14Travel Stipend Application Open for Rare Disease Week on Capitol Hill 2020
The RareVoice Awards nominations for 2019 are open! We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders, having passed or supported legislation for the rare disease community at the state and federal level. There is even a category for teenagers/young adults who have […]
RDLA and SmithSolve Launch Fast Forward for RARE
/in Featured, News /by Grant KerberEarlier this year, hundreds of advocates representing every state gathered in Washington, DC for the Rare Disease Week Legislative Conference. Their energy and enthusiasm raised the roof, as they shared experiences and prepared to visit their legislators on Capitol Hill. What a difference a pandemic makes. We replaced our daily routines with the mostly quieter […]
Register for Rare Across America
/in Featured, News, Uncategorized /by Shannon vonFeldenThis summer, rare disease advocates across the country have the opportunity to meet with their federal legislators close to home in the state and district offices. You can make an impact on federal policy, share your rare disease story, and meet other rare disease advocates! Registration for Rare Across America is now open till July […]
900 Patients and Families Attend Rare Disease Week on Capitol Hill 2020
/in Featured, News /by Grant KerberMore than 900 patients and families from across the country attended Rare Disease Week on Capitol Hill 2020 from February 25th – 28th, an annual event hosted by the Rare Disease Legislative Advocates (RDLA). The Week featured events designed to educate and activate advocates and to foster relationships within the community. Advocates representing 227 patient […]
Registration Now Open for Rare Disease Week on Capitol Hill 2020
/in News, Uncategorized /by Shannon vonFeldenYou are invited to join more than 800 advocates for Rare Disease Week on Capitol Hill 2020 from February 25th to 28th. Registration is now OPEN for all the events during this exciting and powerful week in Washington, DC. Rare Disease Week on Capitol Hill brings rare disease community members from across the country together […]
Rare Disease Week on Capitol Hill 2020
/in Featured, News /by Shannon vonFeldenRare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, will bring together over 800 patients, caregivers, and others in Washington, DC for a week of events dedicated to empowering patients, families, friends, and healthcare professionals to become legislative advocates. During the week of February 25-28, 2020, rare disease advocates will […]
Rare Disease Legislative Advocates Honor Leaders Who Inspire Transformational Public Policy Solutions
/in Featured, News, Uncategorized /by Grant Kerber(Washington, D.C., December 5, 2019) Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases (ELF), presented RareVoice Awards to individuals whose public policy advocacy leadership is saving lives and providing hope to millions of children and adults who live with rare diseases. RDLA is committed to growing the patient advocacy […]
2019 RareVoice Awards Finalists Announced
/in Featured, News, Uncategorized /by Shannon vonFeldenThe Rare Disease Legislative Advocates (RDLA) today announced the 2019 RareVoice Awards patient advocate finalists. View the finalists. The RareVoice Awards is an annual celebration, now in its eighth year, to honor advocates who give rare disease patients a voice on Capitol Hill and in state government. Patient advocates, industry executives, and Congressional and government […]
Congratulations Advocates on Over 300 Rare Across America Meetings!
/in Featured, News, Uncategorized /by Shannon vonFeldenThank you to the nearly 600 rare disease advocates who participated in meetings with their federal legislators during the August recess this summer! There were 303 meetings with Members of Congress or their staff in 49 states plus the District of Columbia. This is our highest turnout yet for our in-district meetings program, Rare Across […]
Travel Stipend Application Open for Rare Disease Week on Capitol Hill 2020
/in Featured, News /by Shannon vonFeldenWe are excited to welcome rare disease advocates from across the country to Rare Disease Week on Capitol Hill 2020 in Washington, DC from February 25-28, 2020! Rare Disease Week on Capitol Hill brings rare disease community members together to learn about federal legislative issues, meet other advocates, and share their rare stories with legislators. […]
RareVoice Awards Nominations Closing Soon
/in Featured, News /by Shannon vonFeldenThe RareVoice Awards nominations for 2019 are open! We encourage the community to nominate individuals and organizations who have gone above and beyond to become rare disease policy leaders, having passed or supported legislation for the rare disease community at the state and federal level. There is even a category for teenagers/young adults who have […]