Action Alert: Congress Nearing Vote on “Open Act”–We Need Your Voice!

June 5, 2015

Congress is close to voting on a historic bill, the 21st Century Cures Act (HR 6), that provides incentives to develop treatments for rare diseases. Let’s get a little more specific–let’s talk about the “OPEN ACT.”

The OPEN ACT is part of this bill that stands to double the number of treatments available to rare disease patients.

Global Genes and many rare disease patient advocates and organizations have supported the OPEN ACT and this legislation. The bill also includes billions in new funding for critical research and new funding to accelerate drug approval.

So how can you help make this a reality?  Go here to Contact your Representatives TODAY & Ask them To Co-Sponsor the 21st Century Cures Act! 

Our goal is to show Congress that the rare disease community supports this legislation and get our representatives to sign on! Your VOICE makes a difference!

How will they know about us if we don’t speak up? Speak now for yourself, your children, and all the rare disease patients you know and love–who deserve a chance at a better tomorrow.


This post is brought to you by the team at the EveryLife Foundation and their program Rare Disease Legislative Associates.

Over the last 5 years, Rare Disease Legislative Advocates (RDLA) has become a force on Capitol Hill. RDLA provides a platform to empower the rare disease community to affect change in our government. When allied together our voice can have an impact that can save lives.

Policies and laws in the U.S. have a tremendous effect on the lives of rare disease patients. For example, before the Orphan Drug Act was passed in 1983, only 10 drugs were approved by FDA for rare diseases. The Orphan Drug Act incentivized the development of treatments for rare diseases. Now, there are over 500 drugs or treatments avaible. The Orphan Drug Act was made possible because of individual parents who formed a coalition to advocate together on behalf of legislation to encourage the development of treatments for people with rare diseases.

Anyone can be a rare disease advocate; RDLA is free and open to all members of the rare disease community with an interest in sharing ideas and advocating for the introduction or enactment of legislation. RDLA is designed to be a clearinghouse of ideas while encouraging rare disease organizations to be active on Capitol Hill.  It does not endorse policy, but provides support to all rare disease organizations seeking introduction or enactment of legislation.

Monthly RDLA meetings and our website ( are an educational resource and a platform for individual organizations to promote their legislation. Participating in or supporting RDLA does not imply support for any of the policy proposals or legislation that are discussed at meetings or promoted on the website.

Organizations will send us sign-on letters to gather support for a particular issue, for us to share and promote. Sign-on letters can be particularly effective in communicating support or concerns over an issue in Congress.

Twice a year, we organize events for advocates to meet their representatives in DC and in their home offices. These events are highly effective at advancing legislation, building rapport between advocates and their Representatives, and raising awareness of rare diseases on Capitol Hill.

None of what RDLA does would be successful without YOU! We cater to the advocacy needs of the rare disease community. So whether, you have an idea for a law or a policy, want to educate your lawmaker on your disease, or want to be updated on new laws & policies that affect the rare disease community, RDLA is here for you.

RDLA (Rare Disease Legislative Advocates) is a program of the EveryLife Foundation for Rare Diseases. The Foundation is dedicated to accelerating biotech innovation for rare disease treatments.


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