FOUNDER IDENTITY AND PRINCIPLES

The “Vaincre les Maladies Lysosomales” Society is regulated by the law of “1st July 1901”. It was created on 16 May 1990 by a group of parents of children suffering from lysosomal storage disorders. VML is recognized as being a public utility.
The form of the Society and the democracy related to its legal status are shaped according to its identity and values. VML acts independently but within the laws and the regulations related to the mission and service developed for the members of the Society.
Administrators and members of the “Overcoming Lysosomal Diseases” Society work together according to three main principles:

• RIGOUR
• SOLIDARITY
• COMMITMENT

HEAD OFFICE CONTACT DETAILS

2 ter avenue de France
Code Postal : 91300
COMMUNE : MASSY
TEL : (0033) 1 69 75 40 30 FAX : (0033)1 60 11 15 83
E-MAIL : vml@vml-asso.org

 

ACTIONS OF THE SOCIETY

The actions of the Society follow three main themes: 

Supporting Research in finding a Curative treatment

Funding research programmes and Doctorate Grants

Arranging International Scientific Congress every four years. The last one took place in Paris in 2002 in collaboration with the English MPS Society.

Supporting the Health Services in improving the patients’ quality of life

Increasing awareness through Fund Raising and Broadcasting.

Contribution to the development of a better Care Practice through the Multidisciplinary Consultations in Paris, Lyon and Bordeaux.

Supporting Families on a Daily basis

Multidisciplinary consultations give the children an opportunity to meet with a team of Specialists at the same venue.

The FARE Service      Faciliter  ( Facilitating)
                                Accueillir  (Welcoming)
                                Renseigner  (Informing)
                                Ecouter  (Listening)
This Service provides information about the Lysosomal diseases to families and Health professionals.

Supporting families in the approach of Civil Services

Family Holidays (see ACTIONS FOR THE FAMILIES)

Family Meeting Days (see ACTIONS FOR THE FAMILIES)

THE SOCIETY PLAN OF ACTION

In order to structure its intervention according to a general policy that is clearly outlined and validated by the members of the Society, VML has clearly outlined a project plan for the period of 2005 to 2010.
The main Aim of this plan is to help Cure people suffering from Lysosomal diseases. Keeping this goal in mind, the priority for the above mentioned period will be as follows:

1- IMPROVING and INCREASING HELP AND SUPPORT FOR THE PATIENTS AND THEIR FAMILIES
2- FACILITATING SCIENTIFIC AND MEDICAL RESEARCH

In order to achieve these two main goals, VML has identified five priority actions:

• Building International links
• Developing Financial Resources
• Implementing an Effective Communication System
• Improving existing branches and opening of new branches
• Improving financial and professional social management