The Undiagnosed Alliance: Mission and Goals
The Undiagnosed Alliance (the Alliance) is a coalition of undiagnosed rare disease stakeholders coming together with the purpose to foster unified advocacy among patient organizations, individuals, and stakeholders in the medical community to address the clinical, personal, and political challenges facing the undiagnosed rare community. To achieve its purpose, the Alliance aims to do the following:
- Educate the rare disease community, physicians, policymakers, and other stakeholders about undiagnosed rare diseases;
- Develop and disseminate consensus policy positions to address identified policy barriers;
- Identify and promote clinical and non-clinical resources available to undiagnosed patients;
- Promote the creation of new clinical and non-clinical resources to be made available to the undiagnosed community;
- Facilitate public engagement between medical and policy experts (and between experts and patients) to discuss issues pertinent to the undiagnosed rare community;
- Solicit input and from – and actively collaborate with – undiagnosed rare patients and their families for the purpose of informing awareness and policy activities.
More to come soon!
Contact information:
To Read: A mother’s unrelenting crusade to help those trapped in the wilderness of the undiagnosed – by Lee Benson
To Read: “What is the hardest part of being undiagnosed?” by Gina Szajnuk
To Read: “Undiagnosed is a Diagnosis” by Ava and Gina Szajnuk
To Read: The Szajnuk Journey
To Read: “Push Through” by Ava Szajnuk
To Listen: RARE Cast by Global Genes: “A Young Rare Disease Advocate Discusses Life with an Undiagnosed Condition”
To Read: How Utah Jazz GM Justin Zanik found himself fighting for not just his team, but his life – ESPN
To Listen: ESPN Daily: How a Family’s Bond Saved the Jazz GM
