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:

1. Educate the rare disease community, physicians, policymakers, and other stakeholders about undiagnosed rare diseases;
2. Develop and disseminate consensus policy positions to address identified policy barriers;
3. Identify and promote clinical and non-clinical resources available to undiagnosed patients;
4. Promote the creation of new clinical and non-clinical resources to be made available to the undiagnosed community;
5. Facilitate public engagement between medical and policy experts (and between experts and patients) to discuss issues pertinent to the undiagnosed rare community;
6. Solicit input and from – and actively collaborate with – undiagnosed rare patients and their families for the purpose of informing awareness and policy activities.

Undiagnosed Day, to honor the undiagnosed rare disease community, is coming up on April 29th!

More to come!

If you would like to join our Undiagnosed Alliance in 2019, please email ginaszajnuk@gmail.com.

Thank you for your continued support of the entire undiagnosed rare disease community!