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Get Involved

Why get involved on our CDG cause?

When you get involved on our CDG cause, you become part of the answer.

No matter how you want to give back, we have the right opportunity.

Take part in an event. Advocate on behalf of others with CDG.

Form meaningful connections locally or online.

Take a moment today and join our community of champions to help those with CDG live their best life.

With the support of people like you, we create and speed up several programs aimed at fighting on all A2.C4.U2.R3.E2 fronts:

  • We’re driving the Annual World CDG Awareness Day since 2016
  • We’re helping the CDG advocates of tomorrow
  • We’re connecting Families and Professionals through Biennial World Conference on Congenital Disorders of Glycosylation (CDG)
  • We’re creating CDG care and management resources for patients and professionals
  • We’re setting up collaborations to build CDG knowledge and tools
  • We’re creating resources to improve CDG understanding
  • We’re driving innovative research to boost clinical development and to pave the way for CDG therapies
  • We’re empowering people to prevent kidney disease and slow its progression
  • You make lifesaving treatments accessible for patients
  • You’re by our side as we fight for patient rights

When you join our fight, you change lives.

You help us give voice to our community.

Our dream is a world where CDG children and adults have the same opportunities and choices than their peers.


Ways to Get involved


Your impact

“One of the marvelous things about community is that it enables us to welcome and help people in a way we couldn't as individuals."
by Jean Vanier

To find out more about our work, head to the different sections of our website.

Page modified at Thursday, April 16, 2020 - 23:47