Rare Diseases Info Services

Introduction

Rare Diseases Info Service was created in october 2001 under the 1901 law on Associations, with the support of the French Association on Muscular Dystrophies (AFM) and with funds provided by theTelethon.

Its information and support service is now acknowledged as a reference for rare diseases patients and health/social professionals. The team is composed of professionals, doctors and scientists, specialised in rare diseases. Their activity is entirely dedicated to Info Services.

New activities, completing the information and support service, have been developed, such as a connecting service for isolated patients and a training service.

Rare Diseases Info Services is supported by the AFM and the Health Ministry.

Services

• The information and support service
  Rare Diseases Info Services answers by telephone and e-mails the questions of persons concerned by one of the seven thousand rare diseases. Patients and their families need simple and clear information in order to understand the disease. They also need to be guided towards medical services specialised in their pathology or services providing social accompaniment. By meeting other persons concerned, they are given a chance to break their isolation.
  Each request receives a clear reply, adapted to the situation of the person. Rare Diseases Info Services is the first information service on health in France to have been declared conform to a norm of quality (ISO 9001).

• The Rare disease Forum

  The Rare Disease Forum is a community space where patients and their families can meet each other, share information and support. It is structured around names of rare diseases or cross-cutting themes: isolation, refunds, school or professional insertion… It promotes the bridges between cross-cutting issues, such as medical, societal, psychological, financial… The Forum is a secure and moderated by the Maladies Rares Info Services professional team. Click here to login.

• The adverse reactions service

  Since the law of 29 December 2011, drug users can report their own adverse reactions. The team of Rare Diseases Info Services has been trained to accompany in their declaration those who are affected by a rare disease. Information, advice and help with filling thus contribute to fostering declarations and strengthening their quality. This service is provided by telephone, email and ch@t.

• The training service
  Rare Diseases Info Services organises modular training sessions for professionals of the health and social sector. The aims of these sessions are to improve the  knowledge of rare diseases, the specific aspects of their sanitary and social coverage, and the available sources of information. Three modules are proposed:
• Rare diseases : general issues, medico-social coverage, information and support ressources.
• Rare diseases : general issues and medical challenges
• Rare diseases : what social accompaniment for specific issues ?

Achievements

• The Rare Diseases observatory
  Rare Diseases Info services 2016 has worked with the support of Genzyme. The purpose of this Observatory is to collect objective data on the issues to which patients are confronted . Data are collected by means of qualitative and quantitative surveys targeting users of the information and support service. The annual updating of these surveys makes it possible to observe from year to year the evolution of results, and accordingly, of the situation of patients.
• The Social and in Health Support Network by telephone (TeSS)
  Rare Diseases Info Services is a co-founder and active member of the "TeSS network". This network aims at favouring exchanges of good practice between the twenty or so services involved. It also seeks to promote Social and in Health support network by telephone as an actor of social cohesion and public health promotion, by proposing adapted and efficient services to their three million yearly users.