Register for Rare Across America

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 3rd.

Rare Disease Legislative Advocates (RDLA) staff organizes meetings for rare disease advocates with their Members of Congress and/or the Member’s staff. The meetings take place in the Member’s district office during the month of August, while Congress is in recess from August 3rd to September 7th, 2020. The RDLA team also helps to prepare advocates for their meetings, providing legislative resource materials and hosting pre-meeting training webinars.

No prior advocacy experience is necessary.

Registration for this event and all RDLA events are free for rare disease advocates.

REGISTER HERE!

For more information, visit www.RareAcrossAmerica.org.

SAVE THE DATE: The Rare Across America training webinar will take place on July 9th at 2 pm EST and a special Social Media training webinar will take place on July 14th at 1:00 pm EST.

Registration Now Open for Rare Disease Week on Capitol Hill 2020

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 to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators. 

Please view the events below and register! Attendance at the Legislative Conference on February 26th is required in order to attend the Hill Day on February 27th. Please note that if you are bringing a spouse or caregiver, you must register each person for each event they plan to attend. If you are bringing a child or children, please add them to your own registration where indicated.

SCHEDULE 
Rare Disease Week on Capitol Hill includes the following events, all of which are free for patients, caregivers and other advocates.

  • Monday, February 24th: Rare Disease Day Public Meeting at FDA in Silver Spring, MD. Look out for more information on registration from FDA.
  • Tuesday, February 25th, 12:30-1:30 pm: Rare Disease Caucus Briefing, Russell Senate Office Building, Room 325.
  • Tuesday, February 25th, 5:30 – 9:30 pm: Cocktail Reception and Rare Disease Documentary Screening at the Ronald Reagan Building.
  • Wednesday, February 26th, 8:00 am – 4:45 pm: Legislative Conference at the Ronald Reagan Building. Every person participating in the Legislative Conference and Hill Day will need to register for the event including young adults.
  • Wednesday, February 26th, 6:00 pm: Young Adults Meet-Up at the Rare Hub.
  • Thursday, February 27th, 7:00 – 8:30 am: Hill Day Breakfast at the Ronald Reagan Building.
  • Thursday, February 27th, 9:00 am – 5:00 pm: Scheduled Meetings with Members of the House and Senate on Capitol Hill. Hill schedules will be distributed at the Legislative Conference on Monday.
  • Thursday, February 27th, 5:00 -7:00 pm: Rare Artist Reception in the Hart Senate Office Building, Room 902.
  • Friday, February 28th, 8:30 am – 4:00 pm: Rare Disease Day at NIH in Bethesda, MD. Register on the NIH website.

TRAVEL
Attendees need to make their own travel arrangements including hotel reservations. For convenience, there is a courtesy hotel room block at the Washington Plaza Hotel for $199 per night plus taxes. To book a room with the EveryLife Foundation for Rare Diseases room block, please visit the hotel website. We encourage you to watch our webinar to learn more about traveling to Rare Disease Week on Capitol Hill.

WEBINARS
To help you prepare for Rare Disease Week on Capitol Hill, we suggest you join us for a free webinar on February 13th at 1 pm EST/10 am PST. You will learn helpful tips such as what to wear and what to bring for each event, and where to find additional resources.

Also, we invite you to watch this previously recorded webinar that provides you with an introduction and overview of the events during Rare Disease Week on Capitol Hill.

2019 RV Awardees

Rare Disease Legislative Advocates Honor Leaders Who Inspire Transformational Public Policy Solutions

2019 RareVoice Awardees (l to r): Nikia Vaughan, State Advocacy; Debbie Jessup, Congressional Staff; Shayne Woods, Congressional Staff; Isabel Bueso, Federal Advocacy; Dr. Emil Kakkis, Lifetime Achievement; Aidan Abbott, Teen Advocacy

(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 community and working collaboratively, thereby amplifying the patient voice to be heard by local, state, and federal policy makers.

“It is our mission to ensure the 30 million people living with a rare disease in the U.S. has access to early diagnosis and treatment,” said Julia Jenkins, Executive Director of ELF. “The individuals we honor tonight are courageous, inspirational change-agents who have demonstrated passion and dedication in the drive for federal and state legislation that helps make that vision a reality.”

At the event, held at Arena Stage in Washington, D.C., United States Senator Roger Wicker (R-MS) and Representative Lucille Roybal-Allard of California (D-40), were honored with the RareVoice Abbey Award for Congressional Leadership for their tireless efforts in support of the rare disease community.

Dr. Emil Kakkis, MD, PhD, President & CEO of Ultragenyx, geneticist, ELF Founder and current board member, was presented with the Lifetime Achievement Award for dedicating his life to the development of novel life-saving drug treatments for rare diseases, most notably, the creation of Aldurazyme to treat patients with mucopolysaccharidosis (MPS 1), a rare genetic disorder that affects many body systems and that leads to organ damage.

A highlight of the event was the presentation of the Teen Advocacy RareVoice Award to Aidan Abbott. Abbott, a 14-year old from Slinger, Wisconsin, was born with ectodermal dysplasias (ED), a rare congenital disease that affects hair, skin and sweat glands. Some patients with ED are born without many or all of their teeth and suffer collapsed jaws and facial deformation.

After struggling to obtain health insurance coverage for his missing teeth, Aidan worked with Senator Tammy Baldwin (D-WI) to write and name the Ensuring Lasting Smiles Act, legislation that would ensure health plans cover medically necessary services related to a patient’s anomaly or birth defect, including any serious dental and oral-related procedures that are necessary to maintain health and overall function.

Via her video salute to Aidan at the event, Senator Baldwin said, “Aidan never stops fighting for families like his. Your story continues to inspire me, and I can’t wait to see what we accomplish together.”

When presented with his award, Aidan told attendees, “Never stop fighting for what you know is right. I won’t stop fighting until the Ensuring Lasting Smiles Act becomes the law of the land because it will make a huge difference for me and others who have ectodermal dysplasias and congenital anomalies.”

Additional awards were presented to the following outstanding advocates:

• Isabel Bueso, a native of Guatemala, was presented with the Federal Advocacy Award. Isabel came to the U.S. to participate in a clinical trial for mucopolysaccharidosis type VI (MPS VI). For six years she has become an advocate for rare disease issues, including newborn screening, NIH funding and orphan drug designation. Isabel is awaiting notification of her medical deferred action status, since the program was reinstated this fall.

“Isabel Bueso is a remarkable soul,” said California Congressman Mark DeSaulnier (D-11). “Whether advocating for students with disabilities or fighting to save herself and her family from deportation, Isabel has demonstrated time and again that she is brave and strong. In the face of adversity, I have come to admire Isabel for her courage to use her voice to help others and her vibrant and positive attitude. I cannot think of a more deserving person for this honor.”

• Nikia Vaughan, of Baltimore, Maryland, the mother of daughter Cimone, seven, who was diagnosed with sickle cell disease in 2012, was presented the State Advocacy Award for her effort to pass State Bill 161 in 2018. The landmark legislation put into place new mandatory healthcare services for children with sickle cell in Maryland schools.

Maryland Representative Dutch Ruppersberger (MD-2), Nikia’s Congressman, congratulated her by saying, “Maryland’s Second District is home to many amazing community leaders and Nikia Vaughan is no exception. Nikia has been a passionate advocate for sickle cell awareness on behalf of her daughter, Cimone, and even helped pass legislation establishing new guidelines for providing services to students with sickle cell in our public schools. It is an honor to congratulate Nikia on her nomination for a RareVoice award and thank her for her tireless work on behalf of the entire rare disease community.”

• Debbie Jessup, Health Policy Advisor to Representative Roybal-Allard (CA-40), and Shayne Woods, Senior Policy Advisor to Representative Gus Bilirakis of Florida (R-12) were presented with awards in the Congressional Staff category.

Mike Porath, founder and CEO of The Mighty, the leading digital health community, served as masters of ceremonies for the event, while Tilea West, the 2019 Cherry Blossom Queen and rare disease advocate, presented the awards.
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.

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/.

Urge Legislators to Attend Rare Disease Caucus Briefing on September 11th

On September 11th, RDLA in coordination with the Rare Disease Congressional Caucus will host a briefing on “The Importance of the Newborn Screening Saves Lives Act”. This event will brief Members of Congress and staff on the importance of newborn screening programs and the impact of newborn screening on American’s lives.

CLICK HERE to email or phone your legislators and urge them to send staff to the event!

You can find out more about the event here or contact Shannon at the EveryLife Foundation at svonfelden@everylifefoundation.org.

 

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.