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.

NORD is Encouraging Patient Advocates to Call or Email Their Members of Congress to Ask Them Not to Repeal the Orphan Drug Tax Credit

Lawmakers are currently considering tax reform legislation that could repeal an incentive for developing orphan drugs: the Orphan Drug Tax Credit (ODTC). NORD is encouraging advocates to call or email their Members of Congress to ask them not to repeal the ODTC. Last month, the organization circulated a letter from patient organizations to Congress highlighting the importance of the ODTC.

Click here to call your Member of Congress.

Click here to email your Member of Congress.

The Epilepsy Foundation Asks Patient Advocates to Write to Their Legislators to Oppose the ADA Education and Reform Act of 2017

The Epilepsy Foundation is asking patient advocates to write to their legislators to encourage them to oppose the Americans with Disabilities Act (ADA) Education and Reform Act of 2017 (HR 620). According to the Foundation, the bill would weaken protections for people living with disabilities by making it easier for businesses to avoid complying with the accessibility requirements of the ADA. Click here to take action.

Ask Your Members of Congress to Join the Rare Disease Congressional Caucus

Help us strengthen the rare disease community’s voice on Capitol Hill! The Rare Disease Congressional Caucus is a forum for Members of Congress to voice constituent concerns, collaborate on ideas, facilitate conversations between the medical and patient community and build support for legislation that will improve the lives of people with rare diseases.

Click here to invite YOUR legislators to join the bipartisan Caucus!

NORD is Encouraging Advocates to Ask Their Senators to Oppose the “Graham-Cassidy” Bill

The Senate is currently considering an Affordable Care Act (ACA) replacement bill co-sponsored by Senators Bill Cassidy (R-LA) and Lindsey Graham (R-SC). The National Organization for Rare Disorders (NORD) is asking patient advocates to email or call their Senators to oppose this “Graham-Cassidy” bill. The organization has outlined how this legislation could be detrimental for rare disease patients in their new statement (click to read). According to the organization, provisions allowing states to opt out of key coverage protections for individuals with pre-existing conditions would be especially concerning.

Click here to find out how to take action.

Call on Your Members of Congress to Attend the September Rare Disease Congressional Caucus Briefing!

On September 13th, the Rare Disease Congressional Caucus will host a briefing on “Curing Rare Disease: Policy and Regulation Needed for Emerging Technology.” This event will brief Members of Congress and staff on the need for policy and regulation that does not only keep pace in this new era of innovation, but also ensures that patients benefit the application of new technologies to safe and effective treatments.

You can find out more about the event by CLICKING HERE or contact Sabah at the EveryLife Foundation at SBhatnagar@everylifefoundation.

SYNGAP Asks Patient Advocates to Sign Letter on Quality-Based Physician Reimbursement

When Congress replaced the Sustainable Growth Rate (SGR) formula for how clinicians got their annual raises and bonuses (and penalties), they replaced it with a system where clinicians had to meet certain quality measures, make improvements to their practices, use technology to aid the patient experience, etc. Now kicking off it’s second year of this very different approach to physician payments, CMS is asking for suggestions. In this letter, SYNGAP asks CMS to recognize that clinicians will not always have quality measures for rare and ultra rare diseases, their costs may be greater to treat our patients, and practice improvements or technology adoption for just a few patients may be more difficult to implement. The system should not fail those clinicians who are treating ultra rare patients.  SYNGAP recommends some common sense changes for CMS to adopt related to how clinicians can still get their raises and bonuses when treating rare and ultra rare patients.

Click here to see sign-on letter.

Please email Monica Weldon at if you have questions and/or would like to sign this letter by August 20.

The Alliance for a Stronger FDA Encourages Advocates to Ask Their Legislators for Robust FDA Appropriations

The Alliance for a Stronger FDA is encouraging patient advocates to ask their legislators to support robust funding for the Food and Drug Administration (FDA). The FDA plays a critical role for rare disease patients because:

  1. The Agency ensures access to safe and effective medical products and is key to preserving public health.
  2. FDA-regulated industries are world leaders in discovery and innovation in large part because of the stability and oversight provided by FDA.
  3. FDA’s well-trained staff is indispensable. The products overseen by FDA cannot be evaluated without specialized scientific and technical knowledge.

In order for patients to have access to innovative treatments, robust appropriations funding for the FDA is critical. To read the Alliance for a Stronger FDA update on challenges and threats to the FDA, click here.

To send a a note to your legislators, click “take action.”

Rare New England Asks Massachusetts Residents to Contact Their State Legislators in Support of MA Rare Disease Advisory Council

Rare New England (RNE) asks Massachusetts residents to call or email state legislators to ask for their support for HB3714, “An Act to Create a Rare Disease Advisory Council.”

RNE has been collaborating with MA State Representative Paul Heroux, who has championed HB3714, since 2015. To learn more about the bill, click here.

SYNGAP Asks Patient Advocates to Sign Letter to Change Hospital Reimbursement System

Hospitals are paid today according to an antiquated system set up in 1983, the same year the Orphan Drug Act was passed to incentivize the development of orphan disease treatments. We’ve come a long way in getting those treatments, but nothing about hospital reimbursement has changed in all that time. The more extremely rare a condition and patient, the more a hospital may want to turn them away with minimal care.

Please sign this letter to kick off an effort to change this almost 35 year old inpatient hospital payment system so that hospitals are able to care for rare patients like the ones we serve.

Click here to see sign-on letter.

Please email Monica Weldon at if you have questions and/or would like to sign this letter.

Click here for more information about Bridge the Gap- SYNGAP Education and Research Foundation.

NORD Asks Advocates to Contact Their Senators to Urge Them to Vote NO on the Better Care Reconciliation Act (BCRA).

NORD asks advocates to call, email or message their Senators to urge them to vote no on the Better Care Reconciliation Act (BCRA). The Senate released the Better Care Reconciliation Act (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House, earlier in June.

NORD believes that, if enacted, the bill will harm rare disease patients by cutting hundreds of billions of dollars from Medicaid, and removing key pre-existing condition protections. You can read NORD’s statement here.

Click here for more information on ways you can take action.