Expand global outreach.

Alport Syndrome Alliance will build the capacity of the Alport community in voicing patients’ needs, engaging Alport patients in developing a registry and biobank, in healthcare policy, in access to treatments and in improving the quality of life, as well as in representing Alport in related health issues.  

Expand global outreach

  • Promote and assist the development of new national patient organizations.

  • Contribute and participate in the global rare disease agenda and with other health issues related to the kidney (dialysis, transplant, genetic issues) and other related issues in eyes and ears

    Ensure that patient priorities and unmet needs are addressed in the global research agenda

  • Support medical symposiums to inform clinicians (eg geneticists, nephrologists etc) about current diagnosis and treatment guidelines

  • Support international research workshops to align the strategies of all stakeholders

  • Work with government stakeholders to raise the profile of Alport Syndrome