Advocate with Confidence
These resources are designed to support families, caregivers, and community members as they raise awareness, engage with decision makers, and help advance policies that improve the lives of people living with Angelman syndrome.
Angelman Syndrome Advocacy Toolkit
General Resources
Start here for foundational information about Angelman syndrome, preparing to contact lawmakers, sharing your story with regulators, or getting involved at the state level, these resources can help you understand the issues and make your voice heard.
What is Angelman Syndrome?
Angelman syndrome is a rare neuro-genetic disorder that affects development, communication, movement, sleep, seizures, and daily living. This overview is a helpful starting point for families, new advocates, policymakers, and community members who want to better understand the lived experience of AS.
Veteran Advocate Community Members
Angelman syndrome is a rare neuro-genetic disorder that affects development, communication, movement, sleep, seizures, and daily living. This overview is a helpful starting point for families, new advocates, policymakers, and community members who want to better understand the lived experience of AS.
Federal Agency Resources
These resources explain how the Angelman syndrome community is working to ensure regulators and drug developers understand the real-world impact of AS, caregiver priorities, and what meaningful treatment benefit can look like.
FDA Advocacy Efforts
Learn why FDA engagement matters and how the Angelman syndrome community can help regulators understand lived experience, treatment preferences, and meaningful outcomes.
Voice of the Patient Report
The Voice of the Patient Report captures the lived experiences of individuals with Angelman syndrome through their caregivers and highlights the impact of AS symptoms, the need for round-the-clock support, the urgent need for disease-modifying treatments, and limitations of current symptomatic therapies. The live site says the report was submitted to the FDA following the April 7, 2025 EL-PFDD meeting.
EL-PFDD Meeting
Congressional Advocacy Resources
Use these resources to understand current federal policy priorities, prepare for meetings with elected officials, and learn how the AS community is working to build champions in Congress.
Policy Priorities
Angelman syndrome families face complex medical, financial, and caregiving challenges every day. Our advocacy priorities focus on policies that improve access to care, protect essential supports, reduce barriers for caregivers, and accelerate progress toward meaningful treatments.
Together, ASF and FAST work with families, clinicians, researchers, lawmakers, and partner organizations to ensure the needs of the Angelman syndrome community are understood and represented at the federal level.
Credit for Caring One Pager
Caregiving for a loved one with Angelman syndrome often comes with significant out-of-pocket costs, time away from work, and long-term financial strain. Families may pay for respite care, home modifications, transportation, therapies, supplies, and other supports that are not always fully covered.
We support caregiver tax relief that recognizes the financial impact of caregiving and helps families continue providing care at home.
Congressional Advocacy Day
Learn how Angelman syndrome advocates come together in Washington, D.C. to share their stories, build relationships with lawmakers, and advance shared federal priorities.
Letters Supported
ASF and FAST also join partner organizations in supporting letters that advance shared rare disease, disability, research, and caregiver policy priorities.
These letters allow the Angelman syndrome community to stand in unity with other advocacy organizations and help lawmakers understand the broader impact of policy decisions on families living with rare and complex conditions.
State Advocacy Resources
State-level advocacy can help improve access to services, supports, funding, disability policy, caregiver resources, waiver programs, and awareness efforts in local communities.
State Advocacy Efforts
Learn why state advocacy matters and how state-level policies can affect access to essential services, support systems, and quality of life for individuals with Angelman syndrome and their families.
Medicaid: What’s changing?
Medicaid: Home and Community-Based Services (HCBS)
Medicaid is a lifeline for many individuals with Angelman syndrome. It helps families access therapies, medications, specialist care, home- and community-based services, medical equipment, and long-term supports that are often essential to daily life.We support policies that protect and strengthen Medicaid so individuals with complex disabilities can receive the care they need, in the setting that works best for them and their families.This is a concise resource advocates can use when discussing Medicaid issues with policymakers. This should help explain why Medicaid matters to individuals with Angelman syndrome and their families, especially when it comes to long-term care, home- and community-based services, therapies, and daily support.
State Proclamations
Become a State Advocate
Share what you have done or what you are interested in doing at the state level to advocate for Angelman syndrome and rare disease policies. After submitting your information, the advocacy team can follow up with next steps and opportunities to get involved.