ELA for families

ELA for families

Supporting families: helping, supporting, relieving

Helping and supporting families affected by leukodystrophy is one of ELA’s main missions.

To guarantee this mission, ELA has set up a multidisciplinary team specifically dedicated to supporting these families, composed of a secretary, a social worker and a psychologist whose role is to provide answers tailored to the needs of each family.

The ELA Family Support Unit supports families in the various stages of the disease and in all aspects of daily life (family, work, health, education, leisure, etc.).

It offers social and psychological support, as well as respite care for carers and specialised information on disability.

Since its creation, ELA dedicated €15.7 million to families support.

Social support

The Unit supports families in projects related to their disability and in all areas of their daily lives (school inclusion, maintaining or supporting them in employment, orientation towards an institution, actions on housing, etc.).

Within this framework, families can benefit from social support (information, guidance, help with administrative procedures, etc.) and financial support to enable them to carry out adaptation, acquisition or paramedical care projects related to their pathology. The association also covers the costs of purchasing urinary protection and comfort products.

Read the factsheet on leave for carers (French)

Psychological support

ELA offers psychological support to any person affected by leukodystrophy (person affected by the disease, close relative, family carer, etc.). This support can be provided at any time during the illness (after the diagnosis, during the course of the illness, after a death, etc.), and can be one-off or be subject to regular follow-up depending on needs.

At the same time, discussion groups on specific themes are offered during the annual family gathering events. The themes of the discussion groups are chosen according to the problems that families face throughout the illness. These groups are aimed at bereaved families, relatives of people affected by leukodystrophy and people who are ill.

Families reunion at Center Parcs
Communicating through Leuconnect

Support for carers and respite care

With the aim of providing relief to families from their very difficult daily lives, the Family Support Unit offers moments of respite, leisure, culture and pleasure:
• Invitations to shows, cultural and sporting events.
• Financing of an annual respite package designed to promote moments of relaxation and respite for the family: weekends, holidays, shows, restaurant outings, parties with the family.
• Annual weekend gathering of ELA families at Center Parcs.

Family weekend at Center Parcs 2022

Information for families

The Unit provides essential information on disability and health. Several communication media are used:
• the newsletters sent out quarterly by the Unit. The information is based on a social watch carried out by the members of the Unit but also by families,
• the medical and social articles in the ELA Infos magazine. They allow you to stay informed about the latest measures and schemes for people with disabilities and thematic files,
• a subscription to the “Faire Face” magazine dedicated to people with disabilities and their families.

Voir l’événement

Find out about the daily life of Nathan and Noé, twins with leukodystrophy.

Nathan and Noé,
children like any other,
and then life changed…