About US

About US     ·     What we do     ·     Who we help

Families
We are helping patients and family members by:

  • Leveraging resources and knowledge needed to achieve a better understanding of the disease.
  • Promoting meaningful communications between patients, family members, researchers and physicians.
  • Enhancing research by matching the research and drug development design with the needs of the community.
  • Raising global awareness.
  • Encouraging community building.
  • Representing the community’s perspective and interests at conferences and relevant institutions.

Researchers & Clinians
Our activities within Academia and Health care providers are focused at:

  • Unifying and maintaining a successful multi-stakeholder collaborative network.
  • Acting as a primary point of contact with key opinion leaders (KOLs).
  • Matching the research design with the needs of CDG patients and the whole community.
  • Representing research projects within European initiatives/programs (such as Epirare, Eurordis).
  • Gathering and sharing information through attendance to medical congresses and programs.
  • Transaction of scientific-medical information and data into high quality patient-friendly information.
  • Promotion of a community-based outreach work, awareness, education and dissemination of information.