03rd  December  First Conference on Skin and Annual Meeting of the French Federation of Skin during the Dermatology Days of Paris.


The presentation of Pr Andrew Y Finlay from Cardiff  University highlighted the questionnaire on Quality of Life for patients with skin disorders, may they be rare or not.

This questionnaire should be proposed to patients by all dermatologists.

After this Patient Organisations took stock of their activities and difficulties.


26 – 27th November  Leadership School organised by Eurordis.

After several online  courses throughout the year, patient representatives in the ERNs met in Barcelone for the last two training days in Leadership.

We will be issued with a Diploma at the end of the course.

Even if the Catalan setting tasted like summer vacation, it was two days of real and hard work during which we increased our natural capacities and skills to become more efficient when interacting with health professionals in the ERNs.



The aim of this Leadership school has been reached as we gained the competences required to improve the way we bring patients’ voice forward where it matters most.


World population affected by a Rare Disease

New evaluation of the world population affected by a Rare Disease :

In an article published by Orphanet, Orphanet Ireland and Eurordis, the prevalence of rare diseases is of 3,5 to 5,9 % of the worldwide population.

Rare cancers, infectious diseases and poisoning are excluded from this prevalence.

Thus there is an approximate average number of people affected by a rare disease of 300 million worldwide.

(©orphanews 2019.10.08)

ERN-Skin Board Meeting 2019

ERN-Skin Board Meeting in Necker Hospital in Paris.

Two days of intense work, whether in plenary session or in thematic groups.


Patient representatives could express their wishes and dialogue with doctors and researchers to establish together the roadmap for the coming years.

There is a huge amount of work to do but our will and synergy will allow diagnosis, care and treatment for patients to improve at the European Union level


Helplines for Rare Disorders worldwide

Helplines for rare disorders worldwide
Country Organisation      Helpline & other modes of contact
Canada Rare Disease Information and Resource Centre +385 12441393  –
Croatia   * Croatian Help Line for Rare Diseases +385 12441393  –
Facebook group
Denmark * Rare Diseases Denmark +45 33140010  –
France * Maladies Rares Info Services (MRIS) + 33 156538136  –
Germany ACHSE Betroffenen- und Angehörigenberatung +49 3033007080  –
Hungary * Lifebelt +36 617904533  –  –
Ireland * National Rare Diseases Office (NRDO) +353 1800 24 03 65 or + 353 18545065  –
Italy * Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region + 39 049 82 15 700  –
Italy * Telefono Verde Malattie Rare +39 800896949  –
Italy * Centro di ascolto malattie rare +39 800 880101  –
Italy * Centro di ascolto per le malattie rare del Piemonte e della Valle d’Aosta +39346.1059486  +39339.5203554 –
Mexico AcceSalud
Norway Norwegian National Advisory Unit on Rare Disorders Oslo University Hospital +47 23 02 69 75  –
Portugal * Linha Rara +351 300505700  –
Romania * Romanian National Alliance for Rare Disease (NoRo Help Line) +40 260611214  –
Romania * Romanian Myasthenia Gravis Info Centre +40 744704399  –
Serbia * NORBS +381 800333103  –  –
Spain * SIO Feder +34 918221725  –
Switzerland * Infos Maladies Rares +41 848314372  –
Switzerland * Seltene Krankheiten +41 442663535  –  –
USA GARD Genetic and Rare Diseases Information Center +1 8882052311
Wolrdwide ThinkGenetic

medical advice from Genetic counselors :