Survey's & Action Alerts - (this section is under construction)
The Maryland Office of Children and Youth with Specific Health Care Needs (OCYSHCN)
SEEN & HEARD - Speak. Listen. Be Understood.
Parents. caregivers, health care professionals and community organizations are invited to share real experiences about children's health care and support in Maryland.
RARE Foundation Asks Advocates to Encourage Your Member of Congress to Support the FY27 Appropriations Request for the Rare Disease Innovation Hub
RARE 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
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.
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!
