We are thrilled to introduce the Angelman Syndrome Global Community Advisory Board (CAB)! This remarkable group of parent advocates and expert parents/carers has come together with a shared mission: to discuss and advise on the latest developments, challenges, and issues related to Angelman Syndrome, ensuring that the voices of families are represented at every level.
How the CAB Came Together
The Angelman CAB was born out of a desire from the Angelman Syndrome Alliance to strengthen advocacy, amplify the needs of families, and drive meaningful change for the Angelman community in a global collective. For many months, members underwent extensive training with EURORDIS, a global organization dedicated to rare disease advocacy. This specialized training equipped our CAB members with the knowledge, tools, and strategies to effectively engage in crucial conversations with researchers, clinicians, and policymakers.
Key Features of the Angelman CAB:
Global Representation: Members represent countries from all corners of the world, offering diverse perspectives and experiences.
Specialized Training: Each member completed hours of intensive preparation with EURORDIS to ensure they are well-equipped to take on this critical role.
Advisory & Decision-Making: The CAB includes an internal board of four voting members for decisions, with all members actively participating in discussions and offering expert insights.
What This Means for Our Community
The Angelman CAB is a powerful step forward in advocacy and collaboration. By leveraging their training and expertise, these members will help bridge gaps, tackle challenges, and ensure that the global Angelman community is supported in meaningful ways. Whether it’s influencing research, shaping policy, or addressing family needs, the CAB is here to make an impact.
We are proud of the months of hard work and dedication that brought the CAB to life and can’t wait to share more about their contributions as they work tirelessly to create a brighter future for all individuals with Angelman Syndrome and their families.