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.

In-District Lobby Days August 3rd – September 4th!

In-District Lobby Days has concluded! Rare disease advocates across the country streamed into the offices of their legislators, asking their Congressmen and Congresswomen to support pieces of legislation aimed at helping patients with rare diseases. Legislators have signed on to co-sponsor legislation, joined the Rare Disease Congressional Caucus, and agreed to support the Innovation for Healthier Americans when it is introduced in the Senate.

In-District Lobby Days is aimed at building relationships between the rare disease community and members of congress, while helping garner support for some pieces of legislation key to the community. Stay tuned with RDLA for more opportunities to advocate for the rare disease community.

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The House of Representatives APPROVES the 21st Century Cures Initiative with a vote of 344-77

RDLA applauds the House for approving the 21st Century Cures Act by a strong, bipartisan vote of 344 to 77. This landmark legislation will spur scientific discovery and bio-medical innovation, providing hope for patients and their families, while also protecting jobs and America’s leadership role in healthcare innovation.

Attention now turns to the Senate, and we look forward to working with Senators on their ideas and priorities for creating treatments and cures for rare diseases. We encourage the Senate to move quickly in advancing this legislation through the chamber and to the president’s desk.

If you’d like to know more about the contents of the 21st Century Cures Act, click here for our information page on the legislation.

Action ALERT from the EveryLife Foundation: Protect NIH & FDA Funding in 21st Century Cures

We are less than 24 hours away from the historic House vote on the 21st Century Cures Act.

Unfortunately, several Members of Congress have introduced an amendment that would strip away billions in needed funding for NIH & FDA, which would undue much of what we have fought for. We cannot allow this amendment to stand! I know many of you called on Tuesday and your calls are making a difference and getting through. We’re asking you to call again to ensure that Congress gets the message.

Please take a moment to call your Representative and urge them to vote YES on 21st Century Cures and to protect the Cures Innovation Fund. 

As always, THANK YOU for your support and for keeping up the fight! And don’t forget to share this with your networks. We’re close to the finish line!

Action ALERT from the EveryLife Foundation: Urge Congress to Vote YES on the 21st Century Cures Act

As soon as you read this, please click here to call your Member of Congress and urge them to vote YES on the 21st Century Cures Act HR 6.

This week the House will hold a floor vote that will determine the fate of the 21st Century Cures Act HR 6. This historic legislation holds the potential to dramatically advance rare disease research and includes the OPEN ACT, legislation that could double the number of rare disease treatments. But we need your help to ensure the bill passes the House.

Your call and your voice could help make the difference. Please take a few moments to call and take a stand for rare disease patients everywhere.

THANK YOU for your support and for keeping up the fight on behalf of the rare disease community. Please remember to share this alert with your networks and on social media. We need all hands on deck!

Urgent Action Needed: Help Save 21st Century Cures in Georgia

We need your help to pass a historic piece of legislation called the 21st Century Cures Act (HR 6). The bill contains billions in new funding for the Food & Drug Administration, The National Institutes of Health, and a provision that could double the number of treatments available to rare disease patients (The OPEN ACT).

The bill will be coming up for a vote next week and we’ve received reports that Congressman Price in Georgia is not supportive of the legislation.  We urgently need you to send a short email to Kyle Zebley in Rep. Price’s office to tell him how important this bill is to you and your family and for all rare disease patients.  Below, I’ve included a sample message, that can be sent to Rep. Price’s Legislative Director, Kyle Zebley, at

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In-District Lobby Days

Presented by:


We hope you join us for our 2nd annual In-District Lobby Days! In August, Congress will return home to their districts to connect with constituents.  This is the perfect opportunity for the rare disease community to meet with Members of Congress.As you read this, Congress is considering a historic legislative package called 21st Century Cures, that could be a game changer for the rare disease community. Your advocacy could help shape policy and advance the development of treatments and cures for rare diseases. Click below to sign up for In-District Lobby Days:

Deadline to register was Friday, July 17th. Please stayed tuned for more opportunities to advocate for patients with rare diseases!


Meetings will take place between August 3rd and September 4th in the district offices of your legislators.  Once you register, RDLA with Advocacy Associates, will begin scheduling your meetings based on your availability. To prepare advocates for their meetings, we ask that you to join us for one of our Regional Legislative Conferences (separate registration required):




attend our webinars on July 8th & Aug 5th (you will receive call-in information in the confirmation email)

If you have any questions feel free to contact Andy Russell @ (415) 884-0223,


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