Foundation Approves and Implements its 2023-2025 Strategic Plan
June 13th, 2023
We are excited to share the APBD Research Foundation’s 2023-2025 Strategic Plan. This Strategic Plan is the result of efforts spanning eight months, involving our Board of Directors, members of our Scientific Advisory Board, staff, mentors, and Foundation partners and friends. Please accept our thanks to each of you for your insightful contributions!
In the infographic below, you will see that our Plan sets the course for the work ahead by laying out four overarching strategies.
2023-2025 Strategic Plan
Our Mission
The APBD Research Foundation is the only North American patient advocacy and research organization supporting people with APBD and allied diseases. Our mission is to:
Improve the diagnosis and treatment of APBD
Support affected individuals and families
Increase awareness of APBD among health professionals and the public
Facilitate the translation of research into treatments and a cure for APBD
Our Vision
Our vision is “a world without APBD,” accomplished by early diagnosis, accessible care, robust research, reliable information, and effective and affordable treatments.
4 Strategies
Improving Diagnosis and Care
Increase clinical knowledge of APBD
Support the creation of APBD Centers of Excellence
Increase access to information on genetic testing
Improve access to patient care
Preparing for Clinical Trials
Partner with other polyglucosan storage disease and allied disease organizations
Support the establishment and growth of our patient registries
Ensure patient voice in every facet of clinical trial development
Establish connections with our geographically dispersed patients
Advancing Drug Development
Reinvigorate the Scientific and Medical Advisory Board
Continue funding research through UPenn’s Million Dollar Bike Ride
Expand our network of corporate and academic partners
Explore the creation of a research investment fund
Fortifying Internal Operations
Hire paid Executive Director
Grow the Board of Directors, Scientific and Medical Advisory Board, and staff
Implement our Fund Development Plan
We also have important metrics that we are using to track our progress, which we will share in future communications. Please contact us at info@apbdrf.org if you have any questions and would like to learn more about our Plan.
The Plan lays out a bold, but achievable, vision for the future. It builds upon years of work and our recent successes such as the Listening Session with the FDA, the APBD Scientific Conference, the Biomarker Workshops, the APBD and GSD IV Clinical Practice Guidelines, and the study of the global prevalence of APBD and GBE1 disorders. None of them would be possible without you.
With the Plan in place to guide us, the next level of work begins, and it will take community-wide engagement.
Thank you for steadfastly supporting our work to make treatments and a cure a reality. Together, we will ensure a brighter future for patients and families affected by APBD.
Sincerely,
Emil Weiss, Co-Founder and Co-President
Jeff Levenson, Co-President
Natacha Pires, Executive Director