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.

CAL Rare Asks California Residents to Have Their State Representatives Join the Rare Disease California Caucus

The EveryLife Foundation and CAL Rare are urging California advocates to have their state representatives join the Rare Disease California Caucus.  The bipartisan Rare Disease California Caucus is led by Assemblymember and Health Committee Member Rob Bonta (D-Oakland) and Assemblymember and Health Committee Vice Chair Brian Maienschein (R-San Diego) to promote awareness of rare disease issues.

The Rare Disease California Caucus will help to bring public and legislative awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry. The Caucus will give a permanent voice to the rare disease community in California. Working together, we can find solutions that turn hope into treatments.

Please take just 3 minutes to email your legislators today to ask them to join the Caucus!



EveryLife Foundation Asks Advocates to Have Their Members of Congress Co-Sponsor the OPEN ACT

From the EveryLife Foundation for Rare Diseases:

Ask Your Representative to Co-Sponsor the OPEN ACT to Repurpose Drugs for Rare Disease Patients

Take action to support the Orphan Product Extensions Now, Accelerating Cures and Treatments (OPEN ACT; HR 1223).  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. The OPEN ACT could allow for insurance reimbursement of otherwise off-label treatments or procedures, and reduce the cost of orphan therapies. EveryLife Foundation, the National Organization for Rare Disorders (NORD), Global Genes and Genetic Alliance are among the more than 220 patient organizations that support this bipartisan legislation.

To contact your Representative in support of the OPEN ACT, click here.

For further information on the OPEN ACT, click here.


March of Dimes Asks Organizations to Sign-on to Letter Rejecting Proposed Cuts to Newborn Screening Programs

March of Dimes calls on organizations to sign-on to a letter to Congress to oppose the proposed budget cuts included in President Trump’s fiscal year (FY) 2018 budget that would eliminate newborn screening programs. Specifically, they ask that you reject the elimination of the Health Resources and Services Administration’s (HRSA) Heritable Disorders program.

If enacted, the cuts would result in adverse health outcomes for many of our nation’s infants. Elimination of the Heritable Disorders program would roll back state newborn screening progress and limit states’ ability to quickly add new conditions to their newborn screening panels.

To join the organizational sign-on letter, please email Rebecca Abbott, ( by COB Wednesday, June 28th, and include your organization’s name as you would like it to appear on the letter. Please feel free to share with your networks!

Letter available here.




NORD Asks You to Call Your Senator to Protect Medicaid

The National Organization for Rare Disorders (NORD), is seeking individuals to call their Senator to protect Medicaid from harmful cuts.

Last month, the House passed the American Health Care Act (AHCA) which included billions of dollars of funding cuts to your state’s Medicaid program. The Senate is currently considering passing the same or similar legislation, which could delay or deny access to vital care for some of our most vulnerable citizens, individuals with rare diseases.

To identify your legislators and obtain their contact information, click here.

Please ask your California State Legislators to Join the Bipartisan State Rare Disease Caucus

The Rare Disease California Caucus will help to bring public and legislative awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry. The Caucus will give a permanent voice to the rare disease community in California. Working together, we can find solutions that turn hope into treatments. Help us strengthen the rare disease community’s voice by inviting your legislators to join the bipartisan Caucus.

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


Research!America Shares Sign-On Letter Urging Congressional Leaders to Boost Funding for Health Research Agencies

Research!America, is seeking organizations to sign-on and share this letter that makes the case for a bipartisan FY18 budget deal that increases the spending caps and overrides sequestration. To join the organizational sign-on letter, please email Jacqueline Lagoy ( by COB Friday, June 16, and include your organization’s name as you would like it to appear on the letter.


NORD Urges Advocates to Ask Members of Congress to Vote NO on Revised AHCA

From the National Organization for Rare Disorders:

Tell Your Congressman to Please Vote NO on Revised AHCA

Congress is currently reviewing the newest version of the American Health Care Act for a vote later this week, and we need your help.

The new proposal (known as the MacArthur Amendment) could substantially roll back protections for individuals with pre-existing conditions. The bill would allow states to set their own Essential Health Benefit (EHB) categories. The Affordable Care Act eliminated annual and lifetime caps, but only for services that fell in the ten EHB categories. If the EHBs are turned over to states, states could choose to allow insurers to once again set annual and lifetime caps on medically necessary services for rare disease patients by only mandating coverage of certain EHBs.

The bill would also allow states to once again permit insurers to charge higher premiums to sicker individuals. Patients may again face entirely unaffordable premiums if this proposal passes. 

This would be devastating for individuals with rare diseases. Medically necessary prescription drugs and medical care could go uncovered and insurers could once again charge thousands of dollars per month.

Lawmakers could vote THIS WEEK. Please take a minute to phone your legislators and ask them to vote no!

To identify your legislators and obtain their contact information, click here.

Coalition for Health Funding Asks Orgs to Sign-On for Additional HHS Funding

From the Coalition for Health Funding:

Sign Letter in Support of Increased Funding for Labor, HHS, Education and Related Agencies Appropriations

Attached for your consideration is a letter—being circulated throughout the health, education, child development, social services, and workforce communities—urging appropriators increase the allocation for the Labor, HHS, Education and Related Agencies Appropriations Subcommittee for fiscal year (FY) 2018.


Please note that in the interest of expediency, and as a courtesy to the hundreds or organizations that will sign, we will not accept editorial changes to the letter. Signers must agree to sign the letter “as is.”

Below are some FAQs to help you understand this advocacy effort, and build support for the letter within your organization and throughout the community.

What is the 302(b) letter?

The 302(b) allocation is the amount of funding the House and Senate Appropriations Committees provide to the subcommittees. The subcommittees then divvy up the funding between the agencies and programs within their respective jurisdictions. Each year, the Committee on Education Funding, the Coalition for Health Funding, and the Campaign to Invest in America’s Workforce partner to circulate a letter throughout our respective communities in support of strong 302(b) allocations for the House and Senate Labor-HHS-Education Appropriations Subcommittees. The bigger the allocations, the better our chances of securing funding for our agencies and programs; or in the current environment, preventing further cuts.

Why should my organization sign the letter?

At the allocation stage in the appropriations process, discretionary health programs are competing for funding with all of the other nondefense discretionary programs within the austere spending caps. If you care about federal funding for any/all public health, health research, or social safety net programs you should sign this letter. Without a strong 302(b) allocation for Labor-HHS-Education, there is very little chance of increasing funding for your priorities. And there is an even greater likelihood that your priorities will be cut.

What happens once my organization signs?

All signatures will be added to the letter and sent to the House and Senate Appropriations Committees in early May. We will forward you a copy of the letter for your records. A copy will also be posted on the Coalition for Health Funding’s website:

What can I do to help with this effort?

Sign on of course, and/or forward this message and letter far and wide. We are accepting signatures from national, state, and local organizations, institutions, businesses, companies, etc. Essentially, any entity that cares about funding for programs in the Labor-HHS-Education appropriations bill. But no individuals, please!

What is the Coalition for Health Funding?

Established in 1970, the Coalition for Health Funding is the oldest and largest nonprofit alliance working to preserve and strengthen public health investments in the best interest of all Americans. Our dues-paying member organizations together represent more than 100 million patients and consumers, health providers, professionals, and researchers. Please consider joining us as we fight to protect federal investments in health. Learn more about membership at

Questions, please contact Emily Holubowich, Executive Director, Coalition for Health Funding at

NHC and NORD Share PDUFA Sign-On Letter

From the National Health Council (NHC) and National Organization for Rare Disorders (NORD):

People with chronic and rare diseases and disabilities rely on FDA to access innovative, safe, and effective treatments. Not only do user fees provide the funding for FDA to quickly review products, but the current user fee agreements also provide significant improvements and advancements to the health care community that simply cannot wait.

For more information about the letter and to sign using our online form, please click here. We ask that all signatures be submitted by April 20.

Learn more at:

Research!America Urges Congress to Pass FY2017 Budget

From Research!America:

Instead of completing work on an updated budget for Fiscal Year 2017 (FY17) before 2016 ended, Congress passed a temporary stop-gap or continuing resolution (CR) that flat-funds government until April 28, 2017. A draft FY17 “omnibus” spending bill that would direct more funding to National Institutes of Health (NIH) research and other key research and public health priorities sits waiting for further Congressional action. Congress has indicated they are nearing the finish line on this legislation, which needs to be signed into law by midnight on April 28th or the government will shut down. Let them know you support their efforts to get the job done!

Click here to take action!