Our mission

Mission

Our mission is to help bring a future closer in which patients with UGDH syndrome regain perspective and quality of life through scientific research and innovative treatment approaches.

Strategy

The Moiré Foundation is dedicated to promoting scientific and medical research into UGDH syndrome. Our focus is particularly on the development of effective treatments, with special attention to gene therapy.

In addition, we aim to connect individuals, organizations, and institutions involved in (or wishing to become involved in) this syndrome, so that knowledge and experiences can be shared more effectively. We also believe it is important to increase awareness and understanding of UGDH syndrome in society.

To achieve these goals, the foundation undertakes the following activities:

  • Initiating and supporting research into UGDH syndrome and potential treatments.

  • Bringing together researchers, healthcare professionals, patients, and other stakeholders to encourage collaboration.

  • Raising financial resources, such as donations, grants, funding, and crowdfunding, to make essential research and projects possible.

Vision

We believe in a world in which rare diseases such as UGDH syndrome are treatable, and in which patients have the prospect of a fulfilling life. By facilitating collaboration between researchers, healthcare providers, and patients we aim to contribute to medical breakthroughs that not only help those affected by UGDH syndrome, but also advance medical science as a whole.

Our vision is a better future. For Ivan. For all children with UGDH syndrome. For all children with an (ultra)rare condition. And for their families and loved ones.