How To Engage and take action
Action Alerts
- Go to 'Action Alerts' sections below. Select 'Take Action' to be connected to additional information, language templates and the ability to connect to your representatives based on your zip code.
- You can 'Take Action' at both the State level (Maryland General Assembly) or Federal (US Congress)
Connect with your representatives offices directly.
- Look Up your Maryland - General Assembly Represenatives
- Roster by County
- Look up your Federal Representatives - Congress.gov - Find your Members
Advocate with your story
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State Level Advocacy
Action Alerts
Public Health - Sickle Cell Disease - Specialized Clinics and Scholarship Program for Medical Reside
HR 0178
Requiring the Maryland Department of Health to establish certain specialized clinics for the management and treatment of sickle cell disease and establish a scholarship program for medical residents who specialize in classical hematology with a focus on sickle cell disease; and requiring the Governor for fiscal year 2028 to include in the annual budget bill an appropriation of $6,138,000 to support clinic operations, staffing, training, and social support services.
Action Alerts
Calling all rare disease community members – patients, caregivers, clinicians, researchers, and advocates to join a petition to Congress in honor of Rare Disease Week on Capitol Hill.
Support the Access to Genetic Counselor Services Act
This bill would finally recognize genetic counselors as Medicare providers and ensure that beneficiaries can access the personalized, high-quality care they deserve. Please stand with patients, families, and providers in our community by supporting this legislation.
Urge Your Member of Congress to Support the Accelerating Kids’ Access to Care Act
39% of rare disease patients travel 60 or more miles to access care. Due to these barriers to access care, 17% of rare disease patients moved or considered moving in 2019. The Accelerating Kids’ Access to Care Act (AKACA) can reduce the burden on rare disease families by making it easier for out-of-state medical providers to enroll in other states’ Medicaid programs.
Urge Congress to Finish FY26 Appropriations and Protect Research Funding!
Congress is still working to complete the FY26 appropriations process, with current government funding set to expire on January 30. Decisions made in the coming weeks will determine whether NIH and other vital research agencies have the resources they need to advance medical and public health progress, prepare for emerging threats, and sustain U.S. leadership in science and innovation.
EveryLife Foundation Asks Advocates to Urge your Members of Congress to protect rare disease experts, funding, and stability of our nation’s biomedical research and public health agencies
Your Members of Congress need to hear from you about the importance of their strong commitment to our federal health agencies and to the millions of Americans and families affected by rare diseases who rely on federal leadership to drive progress.
Please Restore the Federal Newborn Screening System
Last week, the committee that reviews evidence and provides advice on the Recommended Uniform Screening Panel (RUSP), the Advisory Committee for Heritable Disorders for Newborns and Children (ACHDNC), was terminated, effective immediately. In addition, the Health Resources and Services Administration (HRSA), which oversees the ACHDNC and
Last week, the committee that reviews evidence and provides advice on the Recommended Uniform Screening Panel (RUSP), the Advisory Committee for Heritable Disorders for Newborns and Children (ACHDNC), was terminated, effective immediately. In addition, the Health Resources and Services Administration (HRSA), which oversees the ACHDNC and newborn screening grants, experienced significant layoffs and was listed as one of the agencies that will be included in the plans to form a new Administration for a Healthy America (AHA).
This jolt to the community will inevitably change how we approach advocating for newborn screening at the federal level. The ACHDNC, and the HRSA newborn screening team were critical parts of the federal newborn screening ecosystem that helped to bring uniformity to newborn screening nationwide. ACHDNC was also a central place to advocate for the important issues impacting the newborn screening community. The future of the pathway for federal condition addition for newborn screening without the ACHDNC and the expert teams at HRSA, and other federal agencies is uncertain.
Newborn screening has consistently enjoyed strong bi-partisan support in Congress. Now is the time to call on Congress to renew their strong support for evidence-based, federal newborn screening and restore the program.
The Plasminogen Deficiency Foundation Encourages You to Urge Congress to Protect Access to Orphan Drugs by Supporting a Tariff Exemption for Lifesaving Treatments
Orphan drugs are lifelines for patients living with rare and ultra-rare diseases. Many of these treatments, including therapies for conditions such as Plasminogen Deficiency, which is ultra-rare disease that creates life threatening fibrin-like lesions throughout the mucosal surfaces of the body, are manufactured outside of the United Sta
Orphan drugs are lifelines for patients living with rare and ultra-rare diseases. Many of these treatments, including therapies for conditions such as Plasminogen Deficiency, which is ultra-rare disease that creates life threatening fibrin-like lesions throughout the mucosal surfaces of the body, are manufactured outside of the United States. New international tariffs on imported pharmaceuticals are now creating a direct threat to continued access.
EveryLife Foundation Asks Advocates to Urge Your Senators to Support the Reauthorization of the Rare Pediatric Disease PRV Program
Update: Senate Advances Healthcare Funding and Rare Disease Priorities!!
Our fight to reauthorize the Rare Pediatric Disease PRV Program continues, and our advocacy efforts are paying off. The House of Representatives has just passed a legislative package that includes a five-year reauthorization of the Rare Pediatric Disease Priority Revi
Update: Senate Advances Healthcare Funding and Rare Disease Priorities!!
Our fight to reauthorize the Rare Pediatric Disease PRV Program continues, and our advocacy efforts are paying off. The House of Representatives has just passed a legislative package that includes a five-year reauthorization of the Rare Pediatric Disease Priority Review Voucher (PRV) Program. Now, it is time for the Senate to follow suit.
Urge Congress to Support FY26 Duchenne Funding
Congress has included support for Duchenne and Becker Muscular Dystrophy in draft FY26 appropriations legislation and reports. Congress is considering this legislation this week and next before government funding expires on January 30.
Ear Community Asks Advocates to Urge Their Members to Cosponsor Ally's Act,
H.R. 4606 /SB - 3400
Ally’s Act, H.R. 4606 and Ally’s Act, S. 3400 are bipartisan/bicameral Federal bills that would close the loophole for private insurance companies to deny coverage for bone anchored hearing systems (BAHS) and cochlear implant systems (CI) for both children and adults from birth to age 64, including services, upgrades,
H.R. 4606 /SB - 3400
Ally’s Act, H.R. 4606 and Ally’s Act, S. 3400 are bipartisan/bicameral Federal bills that would close the loophole for private insurance companies to deny coverage for bone anchored hearing systems (BAHS) and cochlear implant systems (CI) for both children and adults from birth to age 64, including services, upgrades, surgery and associated costs that come along with these hearing devices. Ally’s Act, H.R. 4606 and S. 3400 would make coverage fair and consistent. If Ally’s Act becomes the law, every state would benefit from this bill’s services and would help hundreds of thousands of children and adults have access to life-changing treatment, allowing them to live the lives they dream, participate in the workplace and community and enjoy a high quality of life. These implantable hearing systems give children and adults their lives back!
The Myositis Association Urges Co-Sponsorship of H.Res. 277 to Increase Myositis Awareness
The Myositis Association Urges Co-Sponsorship of H.Res. 277 to Increase Myositis Awareness
This ceremonial, nonpartisan resolution officially designates May as Myositis Awareness Month, increasing the visibility of myositis diseases within the highest levels of American government.