Leucodyssée is our therapeutic education program specifically designed for patients, parents of children, and caregivers affected by X-linked adrenoleukodystrophy.

Comprising five workshops, Leucodyssée aims to help participants to own their condition and gain a deeper understanding of it.

Each workshop provides an opportunity to explore different aspects of the disease, offering detailed information, practical advice, and a space for sharing experiences. Our goal is to support patients and caregivers on their journey by providing them tools to live better with the disease.

The workshops are led by a multidisciplinary team that includes nurses, social workers, psychologists, genetic counselors, and physicians specialized in neurology, endocrinology, and hematology, for both children and adults.

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The 5 Leucodyssée workshops

Workshops 1

My Disease: What is adrenoleukodystrophy?

Identify disease symptoms

  • Understand the timeline and order of symptom onset
  • Identify the three forms of adrenoleukodystrophy
  • Locate symptoms in the body
  • Explain what goes wrong in the body
Workshops 2

Manage treatments and the importance of clinical follow-up

Recognize symptoms related to adrenoleukodystrophy

  • Associate symptoms with altered functions and organs
  • Understand treatments based on disease progression
  • Explain clinical follow-up, exams, and frequency
  • Identify key healthcare professionals
Workshops 3

Express and manage emotions

Express emotions

  • Recognize different emotions that I feel
  • Choose strategies to manage emotions
  • Create a personal tool for emotional management
Workshops 4

Live with the disease: social, professional, and educational impact

Identify specific support systems

  • Identifydedicated personnel
  • Define common acronyms
  • Navigate administrative processes
Workshops 5

Understand inheritance and family counseling

  • Knowledge about genetic inheritance
  • Identify at-risk situations for developing adrenoleukodystrophy
  • Recognize at-risk situations
  • Explain genetic inheritance to family members
  • Identify options to avoid disease transmission to future generations