TRANSLAD - Translational medicine in development disorders
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TRANSLAD - Translational medicine in development disorders

TRANSLAD

A best-practice project focussing specifically on the development of healthcare, research and education in the area of rare developmental disorder diseases.

The principal axes of FHU-TRANSLAD
  • Treat Treat

    A centre for patient evaluation and multidisciplinary care

  • Innovate Innovate

    A diagnostic centre at the cutting edge of molecular genetic technology.

  • Teach and Train Teach and Train

    A training and genomics information referral centre for hereditary diseases

  • Humanise Humanise

    A think-tank on societal and ethical issues

  • Find Find

    A clinical, molecular, neuro-cognitive and pathophysiological research centre

  • Home
  • Introduction
  • Diseases involved
  • Principal Axes
    • Area 1 : Treat
    • Area 2 : Innovate
    • Area 3 : Teach and Train
    • Area 4 : Humanise
    • Area 5 : Find
  • Follow-up
  • Coordination
  • Teams
    • Presentation
    • Diagnostics and healthcare teams included in FHU
    • Research teams included in FHU
    • Teams partnering with FHU-TRANSLAD
  • Support us
  • Home
  • Home
  • Principal Axes
  • Treat
  • Objectives of these Reference Centre
  • Providing supportive care to families affected by these rare diseases

Providing supportive care to families affected by these rare diseases

The FHU multidisciplinary team develops various initiatives for providing supportive care to families affected by a rare developmental disorder disease and/or an intellectual disability

The parent support group

This group, which is jointly co-ordinated by social worker Isabelle Guéneau and psychologist Lorraine Joly, has been in existence for almost 10 years. It is an open group (parents come when they can or want to) that meets once a fortnight except during school holidays. The discussion topics are decided for each session based on a schedule given out at the start of the year. The group was jointly set up by parents and organisers and the composition of the group changes from one year to the next. The parents are in search of profitable ideas to serve as organisational, psychological and mental aides. For instance, in 2018-2019, we will be turning the spotlight on a book that one mother in the group recommended to us, and which will be used as a support in our discussions. These discussions offer a means of pursuing issues which, if tackled at an individual level, on one's own, could appear as an inability to express one's feelings. This helps eliminate the risk of isolation linked to disability and difficulty with day-to-day matters with the help of a caring, welcoming group of persons.

The 4 to 7 sibling group

Based on the success of the sibling group, the need was felt for a similar initiative for the young ones. Psychologists Christine Juif and Lorraine Joly came up with a new group for the young ones (4 to 7 years of age). This helps them become acquainted with other children affected by the same issues and have discussions using appropriate support structures (stories, role-playing, puppets, drawings, etc.) outside the family circle, in a caring environment that encourages verbal expression. These brothers and sisters are happy to realise immediately that children the same age as themselves have questions which they thought they alone had to deal with. The sessions are held during each school holiday, starting with the All Saints holiday

The 8-12 sibling support group

Being the sibling of a child with a disability may not always be easy to handle and, in every instance, can lead to questions. Psychologist Lorraine Joly and social worker Isabelle Gueneau conceptualised this group, after the model of the parent group. This helps them become acquainted with other children affected by the same issues and have discussions using appropriate support structures outside the family circle, in a caring environment that encourages verbal expression. These brothers and sisters are happy to realise immediately that children the same age as themselves have questions which they thought they alone had to deal with.

                             

The 13-16 sibling support group

In response to numerous requests, psychologist Lorraine Joly decided to form a new support group of 13 to 16-year-olds, with a sibling having a genetic abnormality as a member. This plan follows on from the support group for 8-12-year-olds that was initially started.

A new initiative of therapeutic mediation with animals

With the support of the KIWANIS, FHU TRANSLAD has introduced a therapeutic mediation initiative for children at the Dijon Bourgogne University Hospital genetic centre. It involves 5 pet therapy sessions held at the François Mitterrand Children's Hospital.
These objectives of this group are :
- to improve and experiment with various aspects of relationships with others and with oneself,
- to optimise one's self-perception in the group and in the eyes of others,
- to offer suggestions for self- experimentation in support of emotional expression and rewarding behavioural choices.
The same children attending the 5 sessions receive supportive care from two of the department's representatives, psychologist Christine Juif and childcare nurse Annick Steinmetz, and animal-assisted therapeutic intervention specialist from the AZCO association (Côte d’Or Pet Therapy Association), Caroline Belair.

Area 1 : Treat

  • Introduction
  • CLAD-Est Reference Centre
  • The DéfI-Bourgogne Reference Centre
    • Introduction
    • Team
  • MAGEC Reference Centre
    • Introduction
  • LLD Referral Centre
    • Roles and tasks
    • The Bourgogne LLD Referral Centre
    • The Franche-Comté LLD Referral Centre
  • ARCs
    • Roles and tasks
    • The Autism Resource Centre of Bourgogne
    • The Autism Resource Centre of Franche-Comté
  • Objectives of these Reference Centre
    • Diagnosing and identifying the genetic cause of rare diseases
    • Co-ordinating patient follow up
    • Recommending consultations with specialist doctors
    • Expanding therapeutic education
    • Providing supportive care to families
    • Setting up genetics counselling
  • Special attention to the quality of healthcare

Other axes

  • Area 1 : Treat
  • Area 2 : Innovate
  • Area 3 : Teach and Train
  • Area 4 : Humanise
  • Area 5 : Find

CHU Dijon - 14 rue Paul Gaffarel - BP 77908 - 21079 Dijon - France
Tél. : 03 80 29 53 13 - Fax : 03 80 29 32 66 - E-mail