4th Conference on European Reference Networks (ERN)

21st-22nd November : The 4th Conference on European Reference Networks (ERN) was held in Brussels (Belgium). To resume the founding concept of the ERNs, suffice to say : «  Get the expertise to travel, rather than patients ». The main thing being that all patients should equally benefit from expertise.


The online consultation platform (CPMS) has already allowed over 250 patients to benefit from this tele-expertise in 2018. However, financing this tele-expertise time is an issue and solutions should be found based on the Cross-border Healthcare Directive.


Those days, shared with two other patient representives of ERN-Skin – Ingrid Jageneau (Belgium) and Ingrid Holzer (Austria) – provided, in plenary and side sessions, an overview of successes and those issues that remain pending.


For instance, the need for information and communication from and about ERNs to be widely developed, in all languages, so that the role of ERNs is known by all, practitioners and patients. In this respect, patients’ associations will have to play a major role.

Likewise, the sustainability of the ERN model was one of the hot topics at the conference. National engagement as well as public-private funding models for some activities, without compromising ERN’s independence, need to be high up on the agenda in the coming months and years. Improving health outcomes and wellbeing for European Patients suffering from rare diseases depends on that.

3rd FIMARAD National Day

In Paris, on 16th  November 2018,  the 3rd (Rare Dermatological Diseases  Channel) National Day allowed to take stock of the work done during the year and projects in progress.

The opportunity to meet again with the Chairs of other French support groups for dermatological disorders members of FIMARAD and  talk about the possible common work we can do locally. A friendly working day.


EURORDIS-Rare Barometer Voices

EURORDIS-Rare Barometer Voices (24.10.2018)

Results of the survey on sufferers’ participation in research

 3213 patients answered, from 42 different countries

It is mentioned that no treatment is available for the great majority of disorders or few are accessible.

For research respondants, the 3 main obstacles for research are :

  • Lack of funding, essentially public
  • Lack of private funding…..also
  • Low number of patients

For patients, the 3 priorities are :

  • Developing therapies
  • Improving diagnosis
  • Identifying the causes and mechanisms of the disorder

1/3 of patients have already taken part in research projects such as:

  • Development of treatments and therapies
  • Quality of life
  • Development of gene therapies

The most important factors for patient participation are:

  • Helping science and other disorders
  • Receiving clear information on the research project
  • Having a good relationship with researchers