(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/2016/05/rdla-blue-300x126.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/2016/05/rdla-blue-300x126.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 […]
Rebrand reflects program’s evolution and commitment to the patient voice The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, today announced the rebranding of its In-District Lobby Days program, which will now be called Rare Across America. The rebrand reflects the program’s evolution and reinforces the RDLA’s commitment to […]
https://rareadvocates.org/wp-content/uploads/2019/03/RAA-Logo-Tag-CMYK-100-2-e1555347212404.jpg218355Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.pngGrant Kerber2019-04-14 22:39:482019-04-15 13:02:08RDLA Announces Rebrand of In-District Lobby Days to Rare Across America
Thank you to the more than 800 rare disease advocates who traveled from 49 states plus the District of Columbia to join us during Rare Disease Week on Capitol Hill 2019, which took place February 24th – 28th! Four-hundred and fifty of these advocates participated in 298 meetings with Members of Congress to bring our message: […]
We are excited so many advocates will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your family and friends too! Below are […]
https://rareadvocates.org/wp-content/uploads/2016/05/Rare-Disease-Week-Logo-e1476291869228.png120144Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.pngShannon vonFelden2019-02-19 15:57:002019-08-27 12:59:53Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
1.) Learn about policy issues that impact you at the Legislative Conference. 2.) Share your unique story with members of Congress during Lobby Day, which is kicked off at our Lobby Day Breakfast.
https://rareadvocates.org/wp-content/uploads/2019/01/Young-woman_leg-conf.jpg23363500Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.pngGrant Kerber2019-01-24 15:19:592019-01-24 18:34:46Top 5 Reasons Why YOU Should Join Us for Rare Disease Week on Capitol Hill 2019!
Rare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates 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 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices […]
https://rareadvocates.org/wp-content/uploads/2016/12/rare-disease-week-on-CH-logo-with-ribbon-1-1.png120370Shannon vonFeldenhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue-300x126.pngShannon vonFelden2018-10-26 11:07:002018-10-26 11:21:28Get Ready for Rare Disease Week on Capitol Hill 2019
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 […]
RDLA Announces Rebrand of In-District Lobby Days to Rare Across America
/in Featured, News /by Grant KerberRebrand reflects program’s evolution and commitment to the patient voice The Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases, today announced the rebranding of its In-District Lobby Days program, which will now be called Rare Across America. The rebrand reflects the program’s evolution and reinforces the RDLA’s commitment to […]
Biggest Rare Disease Week on Capitol Hill Ever!
/in Featured, News, Rare Disease Week /by Shannon vonFeldenThank you to the more than 800 rare disease advocates who traveled from 49 states plus the District of Columbia to join us during Rare Disease Week on Capitol Hill 2019, which took place February 24th – 28th! Four-hundred and fifty of these advocates participated in 298 meetings with Members of Congress to bring our message: […]
Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
/in News, Uncategorized /by Shannon vonFeldenWe are excited so many advocates will be joining us in DC for Rare Disease Week on Capitol Hill. For those who are not able to travel to Washington, DC, there are a number of ways to participate from your own home! Please feel free to share with your family and friends too! Below are […]
Top 5 Reasons Why YOU Should Join Us for Rare Disease Week on Capitol Hill 2019!
/in Featured, News /by Grant Kerber1.) Learn about policy issues that impact you at the Legislative Conference. 2.) Share your unique story with members of Congress during Lobby Day, which is kicked off at our Lobby Day Breakfast.
Get Ready for Rare Disease Week on Capitol Hill 2019
/in Advocacy Tools, Featured, Legislation, News, Rare Disease Week, RDLA /by Shannon vonFeldenRare Disease Legislative Advocates (RDLA) will bring together over 500 patient advocates 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 24-28, 2019, advocates will have an opportunity to meet with Members of Congress and learn best practices […]