Guidelines for Rare Diseases Now Available!

In partnership with PQMD, expert advisors and stakeholders, the Global Alliance for Rare Diseases (GARDaccess) team designed seven guidelines which outline general principles to help create partnership and alliances for persons living with rare diseases and their families. The GARDaccess initiative’s Guidelines for Rare Diseases online, interactive Module is now available! This resource provides essential guidelines for those working with patients who have rare diseases. It addresses potential challenges by identifying best practice guidance to ensure that every patient living with a rare disorder has equitable access to quality healthcare.

The Rare Disease Guidelines were developed as the foundation for the larger GARDaccess initiative. The initiative’s mission is to “Accelerate patient access to quality medicines, treatments, and services for rare diseases by harnessing the collective expertise of partners with shared values”, with a vision of a world where “Every patient living with a rare disorder has equitable access to quality healthcare.”

Soon entering phase 2 of development, the GARDaccess initiative’s work will overcome the challenges and obstacles inherent in single-focused access programs to create a strategic, integrated operating model for global access to rare disease therapies, evolve guidelines to ensure safe and quality products and services for patients with rare disorders globally and raise rare disease awareness and education in under-resourced countries.

Visit the GARDaccess website to learn more about the initiative.

Rare Disease Guidelines January 5, 2023