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 Asks Congress to Keep Medical and Genetic Privacy Protections Intact

From the National Organization for Rare Disorders (NORD) action alert:

Federal lawmakers are currently considering a bill that intends to clarify regulations of employee wellness programs, but instead threatens our medical and genetic privacy.

The Preserving Employee Wellness Programs Act (H.R. 1313) would exempt employee wellness programs from critical patient protections included in the Americans with Disabilities Act (ADA) and Genetic Information Nondiscrimination Act (GINA). This bill would roll back decades of critical patient privacy protections and allow employers to collect information on their employee’s genetic makeup and medical history.

The privacy of millions of individuals with rare diseases could be violated by making incredibly personal and private genetic information legally accessible to employers under the threat of increased premiums. For patients with genetically detectable rare diseases or predispositions to such diseases, privacy is crucially important for individual independence, dignity, and protecting against workplace discrimination.

This bill intends to clarify regulation of wellness programs, but instead could significantly undercut patient privacy protection for employees at high risk for workplace and societal discrimination given the nature and severity of their illnesses or risk of illness.

Please join us in telling Congress that this is unacceptable. Tell your U.S. Senators and Representative to oppose H.R.1313, and stand up for the privacy of patients.

Click here to take action!

Kids v Cancer is asking YOU to support the RACE for Children Act

The RACE for Children Act (Research to Accelerate Cures and Equity Act) would provide that companies developing a cancer drugs would undertake Pediatric Research Equity Act studies of their drug in children when the molecular target of their drug is relevant to a children’s cancer. To learn more and sign on in support, click here.

The EveryLife Foundation seeks your support to end the NIH/FDA hiring freeze

On January 23rd, President Trump instituted an immediate hiring freeze that would affect many federal agencies including the National Institutes of Health (NIH) and the Food and Drug Administration (FDA). Unfortunately, this freeze could significantly hamper research into rare disease treatments as well as the review and approval of new medicines. The EveryLife Foundation for Rare Diseases is asking patient organizations to sign-on to a letter describing the critical importance of the NIH and FDA along with their ability to hire new staff.

CLICK HERE to sign your organization on to the Foundation’s letter!

The Foundation is accepting signatures until Friday, February 24th, so sign on today! Your voice provides needed perspective on how the hiring freeze could harm rare disease patients. Share this action alert with your networks and on social media.

Join Research!America in calling for a standing fund to enable CDC/NIH response in public health emergencies

Earlier this week, National Institute of Allergy and Infectious Diseases (NIAID) Director Anthony Fauci, M.D. made the case for a standing fund to enable rapid Centers for Disease Control and Prevention (CDC) and National Institutes of Health (NIH) response in the event of public health emergencies. Research!America has issued an action alert to echo his call to action.

Click here to support the standing CDC and NIH fund to respond to public health emergencies!

National MPS Society urges your support in Missouri to advance life-changing newborn screening for MPS II and SMA!

The National MPS Society has a great opportunity for Missouri to include two genetic and potentially deadly diseases in their Newborn Screening Panel.  In the next week, the Missouri House of Representatives will be voting on HB 66 to expand the newborn screening requirements to include Hunter Syndrome (MPS II) and spinal muscular atrophy (SMA).

Missouri residents: Please take 3 minutes to ask your state Representative to support HB 66 by clicking here.

Newborn screening is necessary for MPS II and SMA because timely treatment allows for much better outcomes.  Without newborn screening it can take months or years to get a diagnosis.  During that time, the disease is causing irreversible damage throughout the body.  Currently, MPS II and SMA have treatments approved by the Food and Drug Administration with several more treatment options in the pipeline.  Newborn screening would ensure timely treatment of MPS II and SMA, which requires early intervention for the greatest benefit.


The American Academy of Pediatrics (AAP) needs you to voice your support for the safety of vaccines!

The American Academy of Pediatrics (AAP) is circulating a letter to President Trump expressing unequivocal support for the safety of vaccines.  The letter affirms the overwhelming scientific consensus that vaccines are safe, effective, and save lives.  The letter will be accompanied by a non-exhaustive listing of vaccine scientific evidence.  The letter is open to state and national organizations.  To add your organization, please complete the following form.  The deadline to sign on is COB Friday, February 3.  Should you have any questions, please contact Pat Johnson at

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Submit your patient story to be hand-delivered to your Members of Congress!

Any rare disease patient or caregiver unable to participate in Rare Disease Week on Capitol Hill is encouraged to submit a personal story and photo to be hand-delivered to Congress on Lobby Day on March 1st. It is critical for each Member of Congress to hear from local individuals and families about the impact of rare disease and what public policy changes are needed to improve the lives of rare disease patients. Help us give the rare disease community a voice on Capitol Hill!


Rare Stories

  • Please list the website of your patient group or your personal website.
  • Please write a statement about how rare disease has affected your life and what you would like your U.S. Representative and Senators to do on behalf of the rare disease community.

Thank you for sharing your unique story with us as part of Rare Disease Week on Capitol Hill. The deadline for submissions is February 19, 2017.

Subscribe to RDLA’s Mailing List for the Latest Updates

As we head into a crucial juncture for the development of rare disease treatments, our advocacy efforts will play a central role ensuring the progress made by our community continues.  To receive the latest updates at the state and federal levels, sign up for the EveryLife Foundation and RDLA mailing list, and follow RDLA on Facebook and Twitter.  By taking these steps, you’ll be ready when our community needs to act.

Sign-On to Support the OPEN ACT

The EveryLife Foundation for Rare Diseases is asking patient organizations to sign-on in support of the OPEN ACT, legislation that could help double the number of treatments for rare diseases. Already, 173 national patient organizations have signed-on to support this life-saving legislation. Click here to add your organization’s name to the list. For additional background on the OPEN ACT, and to see a list of the signing organizations click here.

National Health Council Urges Patient Organizations to Show Support for 21st Century Cures

The National Health Council is circulating a sign-on letter to Congressional leadership to urge passage of the 21st Century Cures Act by the end of 2016. It is imperative that the tireless work by Congress and the patient community does not go to waste by delaying action until the next Congress in 2017.

For to view the letter and sign, please click here. The goal is to present the letter to House and Senate leaders before Congress comes back on Monday, November 14th, so signatures are requested no later than Thursday, November 10th.

Only the name of organizations will be listed on the letter, not the individual signers.  Please note that you must be authorized on behalf of your organization to commit to signing publicly.

If you have any questions about the letter, please contact Eric Gascho, Vice President of Government Affairs at the National Health Council, at or 202-973-0545.