2019 RareVoice Awards Finalists Announced

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 agency staff gather to honor these outstanding advocates in the rare disease community. Award recipients are chosen by committee from nominations received from the rare disease community. Awardees receive an “Abbey” statuette commissioned specially for the RareVoice Awards, and named for Abbey Meyers, founder of the National Organization for Rare Disorders (NORD).

The honoree in each category as well as the recipients of the Lifetime Achievement and Congressional Leadership Awards will be announced at the 2019 RareVoice Awards on December 4th in Washington, D.C. The event is free and open to the public. Register today.

Congratulations Advocates on Over 300 Rare Across America Meetings!

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 America!

Rare disease advocates from around the country spoke to their legislative officials and their staff on important rare disease issues. Due to the advocates meetings and hard work, we saw the following results!

A Rare Disease Burden Study included in the Senate Appropriations Committee Bill: The Senate Appropriations Committee included language to direct the GAO to study what is known about the total impact rare diseases have on the U.S. economy, including direct medical costs, non-medical costs, loss of income, and the societal consequence of undiagnosed and untreated rare disease. Once passed into the law, the GAO will provide a report within two years.

Six New Cosponsors of the Newborn Screening Saves Lives Reauthorization Act, H.R. 2507/S. 2158: Reauthorize critical existing federal programs that provide assistance to states to improve and expand their newborn screening programs, support parent and provider education, ensure laboratory quality and effective surveillance. More info here.

New cosponsors: Senators Tammy Baldwin (WI), Robert Casey (PA), Amy Klobuchar (MI), Martha McSally (AZ), Krysten Sinema (AZ), and Debbie Stabenow (MI)

12 New Members of the Rare Disease Congressional Caucus. The caucus now has 132 members in the U.S. House of Representatives and 22 in the Senate. Click here to invite your legislators to join the bipartisan Caucus.

New Members: Representatives Sean Casten (IL), Steve Chabot (OH), James Comer (KY), Jason Crow (CO), Kevin Hern (OK), Chris Pappas (NH), Max Rose (NY), Darren Soto (FL) and Senators Edward Markey (MA), Gary Peters (MI), Debbie Stabenow (MI), and Tina Smith (MN)

25 New Cosponsors of the Lymphedema Treatment Act, H.R. 1948/S. 518: Proposes to provide Medicare coverage of lymphedema compression treatment items.

New cosponsors: Senators Lindsey Graham (SC), Maggie Hassan (NH), Rick Scott (FL) and Representatives Anthony Brown (MD), Ken Calvert (CA), Salud Carbajal (CA), Judy Chu (CA), Henry Cuellar (TX), Elijah Cummings (MD), John Curtis (UT), Sharice Davids (KS), Dwight Evans (PA), Jesus Garcia (IL), Josh Gottheimer (NJ), John Larson (CT), Donald McEachin (VA), Donald Payne (NJ), Michael Simpson (ID), Elissa Slotkins (MI), Bryan Steil (WI), Dina Titus (NV), David Trone (MD), Lauren Underwood (IL), Maxine Waters (CA), Randy Weber (TX)

53 New Cosponsors of the Ensuring Lasting Smiles Act, H.R. 1379/S. 560: Proposes to require private health insurance to provide coverage of medically necessary treatments of congenital anomolies including dental services.

New cosponsors: Senators Benjamin Cardin (MD), Steve Daines (MT), Kamala Harris (CA), Doug Jones (AL), Martha McSally (AZ), Pat Roberts (KS) and Representatives Jahana Hayes (CT), Darin LaHood (IL), Michael Guest (MS), Suzanna Bonamici (OR), Trent Kelly (MS), Paul Cook (CA), William Keating (MA), Ro Khanna (CA), Stephen Lynch (MA), Nita Lowey (NY), Doug Lamborn (CO), John Larson (CT), Grace Napolitano (CA), Donald Norcross (NJ), Adriano Espaillat (NY), John Sarbanes (MD), Rashida Tlaib (MI), Scott Peters (CA), Mikie Sherrill (NJ), Suzan DelBene (WA), Adam Schiff (CA), Bradley Schneider (IL), Dwight Evans (PA), Lori Trahan (MA), Tom Cole (OK), David Price (NC), Frank Lucas (OK), Katherine Clark (MA), Mark Meadows (NC), Daniel Lipinski (IL), Madeleine Dean (PA), Antonio Delgado (NY), Sharice Davids (KS), Michael Waltz (FL), Andy Harris (MD), Cathy McMorris Rodgers (WA), Zoe Lofgren (CA), Dina Titus (NV), Cedric Richmond (LA), Theodore Deutch (FL), Jim Banks (IN), Doug Collins (GA), Cheri Bustos (IL), Ross Spano (FL), Mike Bost (IL), and James Comer (KY), Jerry McNerney (CA)

8 New Cosponsors of the Medical Nutrition Equity Act, H.R. 2501: Proposes to require private health insurance, Medicare, and Medicaid to provide coverage of medically necessary food for digestive and inherited metabolic disorders.

New cosponsors: Representatives Earl Blumenauer (OR), Rick Larsen (WA), John Moolenaar (MI), Joe Neguse (CO), Dean Phillips (MN), John Rutherford (FL), Kim Schrier (WA), Chris Stewart (UT)

Thank you!

Thank you again to all the advocates who participated in Rare Across America meetings this summer and continue to build relationships with Members of Congress. If you have not already, please take the time to follow up on your meetings by emailing the staffer you met with and thank them for the meeting and repeat your ask.

Please save the date for Rare Disease Week on Capitol Hill on February 25th to 28th, 2020 in Washington, DC. Rare Disease Week attracts hundreds of patient advocates from around the country to Washington, DC for a week of events dedicated to empowering patients, families, and friends to become legislative advocates. Advocates will have an opportunity to meet with Members of Congress and learn best practices for successful advocacy. No advocacy experience required. The travel stipend application for Rare Disease Week is open. Deadline to apply for a travel stipend is December 2, 2019. You can apply here. Registration for Rare Disease Week on Capitol Hill opens on January 3, 2020 at https://rareadvocates.org/rdw/.

Rare New England asks Massachusetts Advocates to Contact Legislators to Cosponsor H.1934 and SD.2264 to Create A Massachusetts Rare Disease Advisory Council

Rare New England is asking Massachusetts constituents to contact their state legislators and ask them to cosponsor “An Act To Create a Massachusetts Advisory Council”.

Patients and families living with rare diseases face many challenges, including finding accessible medical care, affording available treatments, obtaining appropriate educational opportunities, and having basic needs met in everyday life.

There is a severe deficit of awareness regarding rare diseases and their implications throughout the country, and within the Commonwealth, creating negative ramifications on rare disease patients and those caring for them. Not only is the rare disease community severely burdened by this lack of awareness and support, but often this results in harm or even death to patients.

This bill if enacted will enable a group of expert stakeholders from the rare disease community, including geneticists, genetic counselors, legislators, patients, caregivers, patient advocacy groups, school representatives, hospital administrations, industry, and more, to gather and share perspectives, and discuss opportunities to find solutions to increase quality of lives for all affected by rare disorders.

Click Here to Take Action

Five Ways YOU Can Participate in Rare Disease Week on Capitol Hill Remotely

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 five ways you can make your voice heard during the week’s events.

Monday: Watch the livestream of the Legislative Conference on Monday, February 25th to learn about key legislation affecting the rare disease community. The draft agenda is available here, and you can register for the free livestream here.

Tuesday: Call or email your Members of Congress on Lobby Day on Tuesday, February 26th. The one-page background papers for each of the key legislative issues discussed at the Legislative Conference will be available here prior to Rare Disease Week. You can review them and decide which you might want to ask your Members of Congress to support. You can find more information on calling and emailing your Senators and Representative here.

Wednesday: On Wednesday, February 27th, join our Rare Disease Congressional Caucus briefing from 2:00 pm – 3:00 pm EST. Titled “Rare Disease 101”, this briefing will provide insights on rare diseases and its’ impact on rare disease patients and their families. Register for the free livestream here.

Thursday: Watch the livestream of Rare Disease Day at the National Institutes of Health (NIH) on Thursday, February 28th. The agenda and link to register are available on the NIH website. Speakers include leaders from NIH and the Food and Drug Administration (FDA), as well as representatives from a number of patient advocacy groups.

Social media: Stay engaged with our acitivites by connecting with us on Facebook, Twitter and Instagram. On Twitter, we are @RareAdvocates; on Instagram @Rare_Advocates. For posts related to Rare Disease Day or your own advocacy efforts, be sure to use our event hashtag, #RareDC2019, and to tag RDLA in your posts.

We hope that you will take part in these remote participation opportunities! If you have questions regarding any of these events, please email Shannon von Felden at svonfelden@everylifefoundation.org.

Research!America Asks Advocates to Contact Congress to Complete FY19 Appropriations

Research!America asks advocates to contact Congress to complete the FY19 Appropriations bills. Critical science agencies like FDA and NSF are currently caught up in a partial government shutdown. Encourage your elected officials to end the shutdown and pass all remaining FY19 funding bills, ending the harmful impact on crucial scientific progress.

Click here to take action.

October 17, 2018: RDLA Monthly Meeting

RDLA’s October Legislative Webinar and In-Person Meeting
Wednesday, October 17th
12:00 pm to 1:00 pm ET

  1. New Opioid Law, Joel White, President, Horizon Government Affairs
  2. The Ensuring Lasting Smiles Act, Kathleen Laird, Senior Health Policy Advisor, Senator Tammy Baldwin and Becky Abbott, National Foundation for Ectodermal Dysplasias
  3. The Lymphedema Treatment Act Update, Patricia Egan, Lymphedema Advocacy Group
  4. 2018 Midterm Elections and End-of-Year Legislation, Rebecca Adams, CQ
  5. Rare Disease Week on Capitol Hill 2019, Shannon von Felden, Program Manager, RDLA, EveryLife Foundation

 


Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.

January 24: Monthly Legislative Meeting

RDLA’s January Legislative Webinar
Wednesday, January 14th, 2018
12:00 – 1:00 pm ET

  1. Expanded Carrier Screening, Jennifer Smith MD, Fellow of the American College of Obstetricians and Gynecologists, Consultants in Women’s Healthcare
  2. The Senate Health, Education, Labor and Pensions (HELP) Committee’s Plans for FDA-Related Issues, Remy Brim, Senior FDA Policy Advisor, HELP Committee Ranking Member Patty Murray (D-WA)
  3. The Lymphedema Treatment Act, Patricia Egan, Member, Board of Directors, Lymphedema Advocacy Group
  4. The OPEN ACT, Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases 
  5. Rare Disease Week on Capitol Hill, Sabah Bhatnagar, Program Director, Rare Disease Legislative Advocates, EveryLife Foundation for Rare Diseases 

*Webinar includes OPEN ACT and Rare Disease Week on Capitol Hill recording.

1-24-18 RDLA Webinar Slide Deck (click  for slides)

Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.

The EveryLife Foundation, NORD and Global Genes are Asking Patient Advocates to Tell Congress to Save Orphan Drugs by GIVING THANKS for Rare Disease Treatments

The Orphan Drug Tax Credit (ODTC) is a key provision of the Orphan Drug Act, and promotes research spending on rare diseases by lowering development costs for manufacturers – but this is in jeopardy: the tax reform bill passed in November by the House would eliminate the credit altogether, and the Senate bill, which passed earlier this month, cut it nearly in half.

The EveryLife Foundation for Rare Diseases, NORD and Global Genes feel that without the Orphan Drug Tax Credit, investment in therapies for rare disease patients is at risk!  Before the Orphan Drug Act, manufacturers were often hesitant to invest in developing new treatments for rare diseases because the small patient population made it difficult to recover development costs.

TAKE ACTION NOW to preserve the ODTC by telling Congress why YOU are grateful for it!  Use #RareGratitude and put it to good use!

Here are 4 things you can do to show your #RareGratitude.  It only takes a few minutes to help 30 million Americans waiting for treatments to be developed.

  • Tweet your #RareGratitude!
    • Get inspired with the sample posts below. Tag your Senator and Representative by checking their username here.  Ask your followers to RT!
  • Facebook
    • Post a picture of yourself or your family holding this sign to show your #RareGratitude! Tag your Senator and Representative by checking their username here.
    • Visit your Senator’s and Rep’s pages by checking their username here, and post in the Comments section using a sample post below.
    • Ask your friends and family to do the same, or to share your post.
  • Email your Senator and Representative
  • Call your Senator and Representative

SAMPLE POSTS: 

  • Orphan Drugs saved my life. Now we have to save the Orphan Drug Tax Credit for the 95% who don’t have treatments yet. #RareGratitude #SaveOrphanDrugs
  • #SaveOrphanDrugs for 30M Americans w/ #rarediseases who rely on future development of #OrphanDrugs: org/saveorphandrugs #RareGratitude
  • 30M Americans are counting on the Orphan Drug Tax Credit to save their lives. #RareGratitude #SaveOrphanDrugs
  • I’m giving thanks for the 600 new treatments developed because of the Orphan Drug Tax Credit. #RareGratitude. Preserve the ODTC for the 6,400 still needed! #SaveOrphanDrugs
  • The #OrphanDrug Tax Credit gives me hope for a future treatment for my #raredisease. #RareGratitude. Please #SaveOrphanDrugs {insert picture of yourself}
  • I am a #raredisease patient who does not have a treatment. I’m giving thanks for the #OrphanDrug Tax Credit, because it gives me hope for the future. #RareGratitude. Please #SaveOrphanDrugs!
  • #RareGratitude means giving thanks this holiday for #OrphanDrugs. Please RT & take action to #SaveOrphanDrugs. Millions of #raredisease patients rely on it for the hope of a future treatment! Call Congress using org/saveorphandrugs

 

Every action showing #RareGratitude helps #SaveOrphanDrugs and millions of lives!  THANK YOU!

November 14: Monthly Legislative Meeting

RDLA’s November Legislative Webinar and In-Person Meeting
Tuesday, November 14th, 2017
12:00 – 1:00 pm ET

  1. The National Biomedical Research Act, Beth Pearson, Health and Economic Policy Advisor, Office of Senator Elizabeth Warren (D-MA)
  2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD)
  3. State Medicaid Waivers, Hannah Katch, Senior Policy Analyst, Center on Budget and Policy Priorities
  4. The Children’s Health Insurance Program (CHIP), Carrie Fitzgerald, Vice President, Children’s Health Programs, First Focus
  5. Report on Orphan Drug Costs Relative to Other Classes of Drugs, Steven Grossman, President, HPS Group and Board Member, NORD
  6. Rare Disease Week on Capitol Hill, Sabah Bhatnagar, Program Director, RDLA, EveryLife Foundation for Rare Diseases

11.14.17 Slide Deck

Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.

September 20: Monthly Legislative Meeting

RDLA’s September Legislative Webinar and In-Person Meeting
Wednesday, September 20th, 2017
12:00 – 1:00 pm ET

1. The Haystack Project: Bridging Innovation and Patient Access, Saira Sultan, President and CEO, Connect 4 Strategies

2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD)

3. The California EXPERRT Act, Siri Vaeth, Programs and Outreach Manager at Cystic Fibrosis Research, Inc.

4. The Children’s Health Insurance Program (CHIP), Marielle Kress, Assistant Director of Federal Affairs, American Academy of Pediatrics

5. Rare Disease Week on Capitol Hill, Stephanie Fischer, Senior Director of Patient Engagement and Communications, EveryLife Foundation for Rare Diseases

6. The 6th Annual RareVoice Awards, Sabah Bhatnagar, Program Director, Rare Disease Legislative Advocates, EveryLife Foundation for Rare Diseases

9.20.17 Slide Deck

Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.