Rare Diseases Real Life

Lysogene’s ‘raison d’être’ is first and foremost a reason to act. Act in order to shed a light on the reality of disabilities and try to make minds change.

With this belief, Lysogene has produced a series of mini documentaries immersed in the reality of European families affected by rare neurological diseases: the Sanfilippo syndrome, the Fragile X syndrome and GM1 Gangliosidosis.

Diversity of pathologies, families, living environments, cultures… each mini documentary lifts the curtain on a personal story with much to be learnt from.

Sara, Gaspard, Florence … these children all have their own story, a story with the disease and the potential evolving disabilities it generates.

Hand in hand with patient advocacy groups, these families have done much more than opening their doors. They have opened their hearts and shared with great generosity what daily life has to offer: challenges, doubts, joy, love, and hope.

Each story brings a different perspective on the experience of disability, sincere and never idealized.

Through this series, Lysogene has two main objectives:

  • Raise awareness on the reality of disabilities, whether visible or invisible, among the public and institutions, and their implications on the family and social sphere. Disabilities which, even if they are linked to rare diseases, affect millions of children throughout the world.
  • Remind the scientific and biotech communities that these children and their families are at the center of their commitments.

This project was driven by the vision of Lysogene’s founder, Karen Pignet Aiach.

In a totally autonomous and independent way, Lysogene wanted to contribute concretely to the great battle of the representation of disability in our societies.

We must move forward!

Watch our documentary series:

  • Video 1 – Sanfilippo syndrome
  • Video 2 – Fragile X syndrome
  • Video 3 – GM1 Gangliosidosis

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