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.

SYNGAP Asks Patient Advocates to Sign Letter on Quality-Based Physician Reimbursement

When Congress replaced the Sustainable Growth Rate (SGR) formula for how clinicians got their annual raises and bonuses (and penalties), they replaced it with a system where clinicians had to meet certain quality measures, make improvements to their practices, use technology to aid the patient experience, etc. Now kicking off it’s second year of this very different approach to physician payments, CMS is asking for suggestions. In this letter, SYNGAP asks CMS to recognize that clinicians will not always have quality measures for rare and ultra rare diseases, their costs may be greater to treat our patients, and practice improvements or technology adoption for just a few patients may be more difficult to implement. The system should not fail those clinicians who are treating ultra rare patients.  SYNGAP recommends some common sense changes for CMS to adopt related to how clinicians can still get their raises and bonuses when treating rare and ultra rare patients.

Click here to see sign-on letter.

Please email Monica Weldon at monicaw@bridgesyngap.org if you have questions and/or would like to sign this letter by August 20.

Rare New England Asks Massachusetts Residents to Contact Their State Legislators in Support of MA Rare Disease Advisory Council

Rare New England (RNE) asks Massachusetts residents to call or email state legislators to ask for their support for HB3714, “An Act to Create a Rare Disease Advisory Council.”

RNE has been collaborating with MA State Representative Paul Heroux, who has championed HB3714, since 2015. To learn more about the bill, click here.

March of Dimes Asks Organizations to Sign-on to Letter Rejecting Proposed Cuts to Newborn Screening Programs

March of Dimes calls on organizations to sign-on to a letter to Congress to oppose the proposed budget cuts included in President Trump’s fiscal year (FY) 2018 budget that would eliminate newborn screening programs. Specifically, they ask that you reject the elimination of the Health Resources and Services Administration’s (HRSA) Heritable Disorders program.

If enacted, the cuts would result in adverse health outcomes for many of our nation’s infants. Elimination of the Heritable Disorders program would roll back state newborn screening progress and limit states’ ability to quickly add new conditions to their newborn screening panels.

To join the organizational sign-on letter, please email Rebecca Abbott, (rabbott@marchofdimes.org) by COB Wednesday, June 28th, and include your organization’s name as you would like it to appear on the letter. Please feel free to share with your networks!

Letter available here.