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
Everyone has a story to tell and everyone should be heard.
- Can you relate your experiences to any of the Action Alerts?
- Are you looking for opportunities to share your story?
- Do you want to learn how to tell your story?
If so, complete the Contact Form on the Home Page and let us know.
Action Alerts
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.
Research Amer!ca
August recess is upon us, but advocacy work does not take a break. Make your voice heard when members of Congress are back in their home districts.
How to Urge Your Lawmakers to Withdraw OMB’s Proposed Rule
Please Restore the Federal Newborn Screening System
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 scr
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 Ear Community Urges Co-Sponsorship of Ally's Act,
The Ear Community is excited that H.R. 4606, Ally's Act, has been formally re-introduced in the U.S. House of Representatives by Rep. Joe Neguse (CO). This legislation ensures that private insurance companies will cover critical and life-altering medically necessary hearing devices for children and adults from birth to age 64. These devic
The Ear Community is excited that H.R. 4606, Ally's Act, has been formally re-introduced in the U.S. House of Representatives by Rep. Joe Neguse (CO). This legislation ensures that private insurance companies will cover critical and life-altering medically necessary hearing devices for children and adults from birth to age 64. These devices, including Osseointegrated Devices ("OIDs"), Bone Anchored Hearing Aids ("BAHA"), and Cochlear Implants ("CIs"), provide children with the opportunity to develop alongside their peers and allow adults with the same hearing loss to have a healthy education, career, and social life.
The Ear Community is urging advocates to write to their Representative and ask them to sign on as a co-sponsor of H.R. 4606.
To learn more about how you can help support Ally's Act and make it the law, please visit the Ear Community's website.
The Myositis Association Urges Co-Sponsorship of H.Res. 1195 to Increase Myositis Awareness
The Myositis Association is urging advocates to write to their Representative and ask them to sign on as a co-sponsor of H.Res. 1195.
Throughout Myositis Awareness Month, May 1-31, we are recruiting co-sponsors to move this resolution closer to adoption. Thank you for joining TMA members across the United States as we raise our collective
The Myositis Association is urging advocates to write to their Representative and ask them to sign on as a co-sponsor of H.Res. 1195.
Throughout Myositis Awareness Month, May 1-31, we are recruiting co-sponsors to move this resolution closer to adoption. Thank you for joining TMA members across the United States as we raise our collective voices to bring greater awareness, understanding, and support to all those affected by myositis through H.Res. 1195.
Myositis is a rare autoimmune disease that affects muscles and skin. Chronic inflammation of muscles often occurs together with pain, fatigue, trouble swallowing, interstitial lung disease, and other challenging symptoms. Learn more about myositis at www.myositis.org.
Please support our efforts to secure more co-sponsors for H.Res. 1195 by sending a message to your Member of Congress. You can use the template text as the basis for your message. We encourage you to customize it with your own myositis story, because personalized messages are more effective.
Do you have five more minutes after sending your message? Use the Action Center to find the phone numbers for your member of Congress and place a call to let them know you want them to co-sponsor H.Res. 1195. It only takes a few minutes but will significantly increase the likelihood that your email request will result in securing co-sponsorship!
