Strategic plan

In July 2021, the ARRE Foundation’s Board of Directors approved a strategic plan for 2021-2023. This plan encompasses work grouped in four key areas to advance our mission of supporting research and education that will lead to improved quality of life for those living with ASXL syndromes. Informing the strategic plan was a community survey of families living with ASXL syndromes, as well as a survey of the ARRE Foundation’s Medical and Scientific Advisors.

Strategic priorities

Pillar 1: Invest in and drive ASXL research

Goals:

  • Engage and build the ASXL research community

  • Consistently fund promising research grants

  • Fund a focused portfolio of basic research and clinical research grants

  • Facilitate the sharing of data, resources and ideas among the ASXL research community

  • Encourage family participation in the ASXL Patient Registry and Biobank

Pillar 2: Improve the clinical care and management of those with ASXL syndromes

Goals:

  • Build the global network of clinicians and other allied health professionals who have experience treating ASXL syndromes

  • Develop resources with must-know information for newly diagnosed families and their care team

  • Develop topic-specific resources for common challenges experienced by those with an ASXL syndrome

Pillar 3: Educate, empower and connect the ASXL community of patients, families, medical professionals and researchers

Goals:

  • Build a diverse, supportive and inclusive community of families, medical professionals and researchers

  • Host regularly scheduled, topic-specific virtual education sessions for families

  • Provide meaningful engagement opportunities for those who wish to contribute to advancing the organization’s work

Pillar 4: Strengthen organization’s governance structure

Goals:

  • Build a sustainable organizational infrastructure for long-term success

  • Develop and implement a scalable fundraising strategy to broaden and diversify the organization’s financial support

  • Build and deploy a strategic communications plan to support key priorities

  • Build trust by stewarding resources wisely and communicating transparently with all stakeholders

  • Leverage relationships within the rare disease community to accelerate our work

Strategic plan 2021-2023

The full written plan is available for download below.


 

Our forward progress toward these ambitious goals is only possible with the support of the ASXL community. Please consider joining us as a volunteer or supporting our work financially by fundraising or making a contribution.