As an advocate for patients with rare diseases you are a very important part of the legislative process. You can make the difference as you are the voices your legislators and congressmen want, or in some cases do not want to hear. Please complete the form below to take action and contact your Member of Congress

After you take action your job is not done! The final step is to share the action alert with your family, friends, co-workers and any other people that might be interested in taking action on behalf of the rare disease community.

Sign On and Ask Congress to Advance Medical Innovations Legislation

On behalf of of the Bipartisan Policy Center Advocacy Network, we are sharing this open letter to Congress from former Senate Majority Leader Bill Frist, M.D., former Congressman Bart Gordon, as well as patient, health care provider, research and biomedical industry organizations. The Senate Health, Education, Labor, and Pensions Committee passed a series of initiatives earlier this month as its companion to the 21st Century Cures Act.

Click this link to read the letter and find out how you can sign on to support.

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.

Video: March 3rd Rare Disease Caucus Briefing on The Rare Disease Ecosystem

Earlier this month, the Rare Disease Congressional Caucus hosted a briefing on The Rare Disease Ecosystem: Fostering Patient Engagement & Driving Biomedical Innovation. This briefing was featured as part of the 2016 Rare Disease Week on Capitol Hill. In addition to speeches by caucus co-chairs Senators Orrin Hatch and Amy Klobuchar, Representatives Leonard Lance and Joe Crowley, Representative Gus Bilirakis made a surprise appearance.

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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.

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From EveryLife Foundation: Take Action to Support Lifesaving Newborn Screening Legislation in California

The EveryLife Foundation is working to expand the lifesaving potential of newborn screening in California. Last month, SB 1095 was introduced by pediatrician and California State Senator Dr. Richard Pan. This bill would help eliminate the legislative delay in newborn screening and ultimately ensure that patients are treated as early as possible. Early screening plays a vital role in ensuring that rare diseases are detected and can be better treated. Read more

Action ALERT for Pennsylvania Advocates: Contact the Senate to Boost Rare Disease Treatments

Dear Advocate,

As you may know, the House passed the Orphan Products Extension Now, Accelerating Cures & Treatments or OPEN ACT in July as part of a broader legislative package called the 21st Century Cures Act. The OPEN ACT has the potential to double the number of treatments available to rare disease patients.

Since passing the House, the bill has stalled in the Senate. Your Senator, the Honorable Bob Casey (D-PA) is a key decision-maker on this vital legislation. Please take a moment to call his office to ask that they support the bipartisan OPEN ACT, co-sponsored by Sens. Hatch (R-UT) and Klobuchar (D-MN). You can find suggested talking points below: Read more

Sign On to Support Modernizing Step Therapy

On behalf of the Lupus and Allied Diseases Association (LADA), in conjunction with the International Foundation for Autoimmune Arthritis (IFAA), we are sharing the position paper, “The Ethics of Step Therapy and Autoimmune Disease: Next Steps.” This important investigation into step protocol was led by IFAA, in consultation with bioethicists and LADA, and was recently presented at a Congressional Briefing where an expert group of panelists joined the launch. Read more

Action Alert from the EveryLife Foundation: Ask Your Senators to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients

Take action to support the OPEN ACT – Orphan Product Extensions Now, Accelerating Cures & Treatments (HR 971/S 1421).  The OPEN ACT could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to “repurpose” therapies for the treatment of life-threatening rare diseases and pediatric cancers. EveryLife Foundation, NORD, Global Genes, Genetic Alliance and an additional 155 patient organizations support this bipartisan legislation.


Click here to take action!

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. The Senate’s companion bill to 21st Century Cures, titled “Innovation for Healthier Americans“, has stalled, and 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 write your Senator, urging them to prioritize Innovation for Healthier Americans:
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.

ACTION ALERT: The Advancing Research for Neurological Diseases Act (S. 849)

Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell Building, room 485. The briefing is sponsored by the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, Tourette Association of America, and United Spinal Association.

For more information and to contact your Representative, click here.

ACTION ALERT: Thank the House for 21st Century Cures

The House passed historic bipartisan legislation called the 21st Century Cures Act HR 6, and they deserve our thanks for ensuring that the voice of the rare disease community was heard.  Let’s show every member who supported 21st Century Cures how much their hard work means to us, and how eager we are to see this meaningful legislation make its way through the Senate.  Please take a moment to thank your representative for supporting the 21st Century Cures Act and the rare disease community.