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.pngShannon vonFelden2018-10-26 11:07:002018-10-26 11:21:28Get Ready for Rare Disease Week on Capitol Hill 2019
Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that […]
https://rareadvocates.org/wp-content/uploads/2018/05/rdla-1.png120320Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngGrant Kerber2018-05-10 18:31:192018-05-11 17:08:54Stay Informed! Get the Lowdown on 2018 Elections
Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week’s events.
https://rareadvocates.org/wp-content/uploads/2016/12/rare-disease-week-on-CH-logo-with-ribbon-1-1.png120370Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngGrant Kerber2018-03-08 18:35:402018-03-12 18:30:03Rare Disease Week on Capitol Hill 2018 Brings Hundreds of Advocates to Capitol to Educate Congress
We know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
https://rareadvocates.org/wp-content/uploads/2016/12/rare-disease-week-on-CH-logo-with-ribbon-1-1.png120370Grant Kerberhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngGrant Kerber2018-02-20 15:15:292018-03-09 12:50:04Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
As our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference. This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.
https://rareadvocates.org/wp-content/uploads/2016/12/rare-disease-week-on-CH-logo-with-ribbon-1-1.png120370Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2018-02-14 14:31:062018-02-15 18:50:32Youth Advocacy during Rare Disease Week on Capitol Hill
Earlier this month, Congress passed a Continuing Resolution (CR) extending Children’s Health Insurance Program (CHIP) funding for 6 years. The program provides affordable, comprehensive health insurance for children in families with too much income to qualify for Medicaid, but struggle to afford private insurance. Some states had to temporarily close enrollment or post notices about coverage loss after CHIP expired on September 30, 2017.
https://rareadvocates.org/wp-content/uploads/2017/10/CHIP.1.jpg120320Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2018-01-26 16:38:282018-01-26 16:41:06CHIP Funding Extended for Six Years
Thank you to all who attended and supported our sixth annual RareVoice Awards. You helped us celebrate rare disease advocates who made an impact at state and federal levels.
On November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.
https://rareadvocates.org/wp-content/uploads/2017/12/Cures.jpg120320Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-12-04 21:09:402017-12-05 11:28:4921st Century Cures Update: One Year Later
After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
This week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.
https://rareadvocates.org/wp-content/uploads/2014/09/RareVoice-Loge.png152293Sabah Bhatnagarhttps://rareadvocates.org/wp-content/uploads/2016/05/rdla-blue.pngSabah Bhatnagar2017-11-03 15:37:202017-11-03 15:38:55Meet 2017’s RareVoice Nominees: State Advocacy by a Patient Advocate
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 […]
Stay Informed! Get the Lowdown on 2018 Elections
/in Advocacy Tools, Featured, Legislation, News, RDLA /by Grant KerberHeading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that […]
Rare Disease Week on Capitol Hill 2018 Brings Hundreds of Advocates to Capitol to Educate Congress
/in Events, Featured, News, Rare Disease Week, RDLA /by Grant KerberThank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us during Rare Disease Week on Capitol Hill 2018, which took place February 25th through March 1st. Click through for a full recap of the week’s events.
Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely
/in Featured, News, Rare Disease Week, RDLA /by Grant KerberWe know that traveling to Washington, DC isn’t on option for all advocates. In order to better serve the rare disease community, we’ve provided a number of ways for advocates to participate in Rare Disease Week on Capitol Hill remotely. Below are five ways you can make your voice heard during next week’s events.
Youth Advocacy during Rare Disease Week on Capitol Hill
/in Featured, News /by Sabah BhatnagarAs our Foundation continues to build its youth advocacy programming, we are pleased to offer a dedicated youth advocacy track for our 2018 Legislative Conference. This programming track echoes our belief that it is important for young adults to have their own voice when advocating for issues affecting the rare disease community, and aims to grow that voice to build confidence, develop political leadership skills and raise awareness.
CHIP Funding Extended for Six Years
/in Featured, News /by Sabah BhatnagarEarlier this month, Congress passed a Continuing Resolution (CR) extending Children’s Health Insurance Program (CHIP) funding for 6 years. The program provides affordable, comprehensive health insurance for children in families with too much income to qualify for Medicaid, but struggle to afford private insurance. Some states had to temporarily close enrollment or post notices about coverage loss after CHIP expired on September 30, 2017.
Scenes from a Successful RareVoice Awards Event
/in Featured, News /by Sabah BhatnagarThank you to all who attended and supported our sixth annual RareVoice Awards. You helped us celebrate rare disease advocates who made an impact at state and federal levels.
21st Century Cures Update: One Year Later
/in Featured, News /by Sabah BhatnagarOn November 30th, the House Energy and Commerce Committee held a hearing to discuss, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” A year after 21st Century Cures Act was signed into law, Members of Congress asked Francis Collins, Director, National Institutes of Health (NIH) and Scott Gottlieb, Commissioner, Food and Drug Administration (FDA) to provide updates.
Congress Mulls Healthcare Stabilization Efforts
/in Featured, News /by Sabah BhatnagarAfter President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill entitled, “the Health Care Stabilization Act of 2017” in an attempt to stabilize the marketplace.
Meet 2017’s RareVoice Nominees: State Advocacy by a Patient Advocate
/in Featured, News /by Sabah BhatnagarThis week, we continue to introduce you to advocates nominated for RDLA’s 6th annual RareVoice Awards. The patient activists nominated in the “State Advocacy by a Patient Advocate” category worked to advance state policies that are beneficial for the rare disease community.