Today’s In-District Lobby Days & Legislative Conferences Informational Webinar

RDLA hosted an informational webinar this morning on how you can get registered for the In-District Lobby Days and Legislative Conferences in Boston, Chicago and Seattle.

These half-day conferences will include discussions with federal elected officials, academics, patient advocates and other rare disease stakeholders. They will also provide attendees with the opportunity to network and learn from others in the rare disease community. Lunch will be provided, and there is no cost to attend.  The regional Legislative Conferences will help patients, caregivers and others in the rare community prepare for In-District Lobby Days during the summer Congressional recess (July 18th through September 5th). In-District Lobby Days will provide you with the opportunity to sit and talk with your Members of Congress about your needs and challenges, and explain what they can do to help you and your community.

If you missed it, don’t worry! You can watch it online at your convenience. This webinar will

Click Here to Play the Webinar

  • To register for the Northeast Legislative Conference in Boston on June 28th, please click HERE.
  • To register for the Midwest Legislative Conference in Chicago on June 30th, please click HERE.
  • To register for the West Coast Legislative Conference in Seattle on June 30th, please click HERE.
  • To register for In-District Lobby Days, please click HERE.

Help Pass the Lymphedema Treatment Act!

The National Lymphedema Network is asking for help to pass the Lymphedema Treatment Act, S. 2373/H.R. 1608. This legislation seeks to improve coverage for lymphedema treatment by amending Medicare to cover compression supplies. Also supporting are the American Cancer Society, American Academy of Physical Medicine and Rehabilitation, Oncology Nursing Society, American Physical Therapy Association, and American Occupational Therapy Association.

CLICK HERE to sign on to support!

RDLA’s March Legislative Webinar & Conference Call

 Wednesday, March 23rd: 1:00 pm to 2:00 pm EST 

Click here to REGISTER

These meetings help facilitate open dialog about legislation that affects the rare disease community. They are open to the public and the media. We ask that media formally announce their participation and refrain from quoting any of the discussion during the meeting. We encourage media to follow up with participants after the meeting for direct quotes.

Read more

Community Sign on Request, HR 3520

The Pulmonary Hypertension Association (PHA) is currently circulating an organizational sign-on letter in support of HR 3520, the PH Research and Diagnosis Act.  

PHA is an active member of the rare disease community and they hopethat you will consider joining this sign-on letter due to the importance of this effort to rare disease patients affected by PH, Scleroderma, Sickle Cell, and many other conditions that will be better served through an early and accurate PH diagnosis.

For additional information, see the current Community Sign-on Letter, Dear Colleague Letter from Chairman Brady (R-TX), and the bill language below: 

HR 3520 Community Sign On Letter [DRAFT]

HR 3520 Dear Colleague Letter

H.R. 3520 Bill Language

Senate: Take action on Innovation for Healthier Americans

In July, the House passed the 21st Century Cures Act HR 6, historic legislation that holds the potential to dramatically advance rare disease research and treatments. But the companion bill called, Innovation for Healthier Americans, has stalled in the Senate. We need your help to ensure the bill is acted upon TODAY. Patients can’t wait, as a delay in legislation is a delay in treatment.
Please take a moment to visit the action alert site and send a message to your Senator to ask him or her to prioritize Innovation for Healthier Americans.

RareVoice Awards Gala Honors Rare Disease Advocates and Congressional Leaders

More than 300 patient advocates and industry leaders as well as staff from Capitol Hill and federal agencies joined us last week for the fourth annual RareVoice Awards Gala at Arena Stage in Washington, DC.

Dr. Steve Groft received a Lifetime Achievement award for his dedication to stimulating research and advancing development of therapies during his tenure at the Food and Drug Administration (FDA) and National Institutes of Health (NIH), where he served as Director of the Office of Rare Disease Research from 1993 until his retirement in 2014.

The judges had difficulty selecting the winners among the passionate patient advocates making a difference in states across the country and on Capitol Hill.  Patricia Weltin, President and Founder of the Rare Disease United Foundation, received an Abbey for patient advocacy at the state level. Lisa and Max Schill with RASopathies Network received an Abbey for patient advocacy at the federal level for their efforts in support of the 21st Century Cures Act.  Ronald Bartek, President and Founder of the Friedreich’s Ataxia Research Alliance, received a Lifetime Achievement Award for his tireless advocacy before Congress as well as the FDA and Social Security Administration.

The Chairman and members of the House Energy and Commerce Committee were recognized for their leadership on the 21st Century Cures Act which has several provisions critical to the rare disease community, including incentives to spur development of new therapies. Representative Fred Upton (R-MI) received a Lifetime Achievement Award. Representative Gus Bilirakis (R-FL), G.K. Butterfield (D-NC) and Diana DeGette (D-CO) were honored with Congressional Leadership Awards. Saul Hernandez, Deputy Chief of Staff and Legislative Director for Representative G.K. Butterfield, and Clay Alspach, Chief Health Counsel of the Energy and Commerce Committee, received Abbeys for their work on behalf of the rare disease community.

Dr. Kakkis, President and Founder of the EveryLife Foundation for Rare Diseases, ended the awards ceremony with a call to action, urging everyone in attendance to contact their Senators to ask that the many provisions of the 21st Century Cures Act supported by the rare disease community be included in Innovation for Healthier Americans, the Senate companion bill.

Photos of the awards ceremony and reception will be posted on the Rare Disease Legislative Advocates Facebook page and the RareVoice Awards website, so be sure to visit both.

Thank you to Shire, the Presidential Sponsor, and other sponsors including AbbVie, Alexion, Amgen, Amicus, Genzyme, Novartis, PhRMA, Raptor, and Vertex. Proceeds from the Gala fund Rare Disease Week on Capitol Hill, to be held February 29 through March 3 next year.

Coalition Support letter for the Advancing Targeted Therapies for Rare Diseases Act of 2015

Coalition Support Letter for the Advancing Targeted Therapies for Rare Diseases Act of 2015

Save the Date for Rare Disease Week on Capitol Hill: February 29 – March 3rd

Please pull out your calendars and save the date for RDLA’s Rare Disease Week on Capitol Hill 2016! Read more

#Cures2015 Day of Action

ASK your Senators to make Innovation for Healthier Americans a priority. 

A Delay in Legislation is a Delay in Treatments! Patients can’t wait.

Call Friday, Sept. 25th


Rare Disease Orgs Plan National Day of Action to Spur Senate Legislation for Cure


On September 25th, the EveryLife Foundation and Global Genes have planned a national drive to ensure the Senate takes up the recently passed 21st Century Cures legislation from the House.

Motivated by the rallying cry that “Patients Can’t Wait”, both organizations plan to use the Global Genes Patient Advocacy Summit to pump up support and ensure that the Senate moves forward with this important legislation as soon as possible.

For more information on this Day of Action, follow RDLA, Global Genes and the EveryLife Foundation on social media for the latest updates.