e-Book edited by the French Federation for Skin (FFP)

FFP has just issues its first e-book on :

“Cutaneous disorders and psychology”

The French Federation for Skin helps you and shares a few pages on patients’ psychological situation as well as advice and analysis from our psychologists. It aims to give some points to help live a better daily life with the disorder.

Read (pdf in French)

Annual Meeting and 2nd Conference of the French Federation for Skin

On 1st December 2020 we attended online the Annual Meeting and 2nd Conference of the French Federation for Skin (FFP).

Following the 2020 annual report and the projects for 2021,

the FFP conference opened the floor to experts on the impact of Covid-19 for skin disorders,

paediatric dermatology, users’ participation on the evaluation of health products

and dermatology research.

Needless to say that it was an intense and riveting morning.

Annual Day of the French Network for Rare Skin Disorders

27th November 2020 :  The Annual FIMARAD meeting (French Health Network for Rare Skin Disorders).


Core discussions of the day were : Taking stock of the work done in 2020;


Issues of the MDPH files (Local House for Disabled People); How to involve Patient representatives;


organising the workgroups for 2021;

and ePAGs’ work

See the presentations here



The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022


WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.

The European Commission, Patients and ERN Coordinators give their point of view

European Commission (in almost all European Languages)


Patients (in English and/or with English subtitles)


ERN Coordinators (in English and/or with English subtitles)


Patients’ and associations’ role is poorly recognised

The COVID crisis reveals how patients’ and associations’ role is poorly recognised (Newspaper Le Monde 2020.07.06)

In this newspaper article, three members of the French association Renaloo (kidney failure) make an unanimous  statement : Associations of Health Users were forgotten in the heart of the sanitary crisis :

  • There were no official recommendations for « at risk » people.
  • Associations had to establish themselves « Recommendations for patients » based on international recommendations or those from other countries. ;
  • Nothing was set up to allow « at risk » people to stop working as soon as the crisis started ;
  • Cooperation with patients and their associations was considered incidental and with no priority ;
  • Despite the collective stakes we all had to face, democracy in health suffered a lot ;
  • Never quoted as being part of the various parties committed to protect vulnerable people, nevertheless patient associations were working on all fronts during this period ;
  • In France, except a few cases, patients associations have not yet reached the place they deserve in the medical world;
  • Government communication about vulnerable people focuses only on older aged people and forgets young and active people who are fragile too.


Nothing should be done without Us !

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  –  info@rqmo.org
Croatia   * Croatian Help Line for Rare Diseases +385 12441393  –  rijetke.bolesti@gmail.com
Facebook group
Denmark * Rare Diseases Denmark +45 33140010  –  helpline@sjaeldnediagnoser.dk
France * Maladies Rares Info Services (MRIS) + 33 156538136  –  info-services@maladiesrares.org
Germany ACHSE Betroffenen- und Angehörigenberatung +49 3033007080  –  www.achse-online.de
Hungary * Lifebelt +36 617904533  –  mentoov@rirosz.hu  –  mentoov.rirosz.hu/
Ireland * National Rare Diseases Office (NRDO) +353 1800 24 03 65 or + 353 18545065
rare.diseases@mater.ie  –  www.hse.ie/eng/services
Italy * Università di Padova, Coordinating Centre for Rare Diseases, Veneto Region + 39 049 82 15 700  –  malattierare@pediatria.unipd.it
Italy * Telefono Verde Malattie Rare +39 800896949  – https://www.iss.it/?p=171
Italy * Centro di ascolto malattie rare +39 800 880101  –  http://www.regione.toscana.it/-/centro-di-ascolto-per-le-malattie-rare
Italy * Centro di ascolto per le malattie rare del Piemonte e della Valle d’Aosta +39346.1059486  +39339.5203554 –  segreteria@a-rare.it
Mexico AcceSalud accesalud@femexer.org
Norway Norwegian National Advisory Unit on Rare Disorders Oslo University Hospital +47 23 02 69 75  –  liegen@ous-hf.no
Portugal * Linha Rara +351 300505700  –  info@rarissimas.pt
Romania * Romanian National Alliance for Rare Disease (NoRo Help Line) +40 260611214  –  office@apwromania.ro
Romania * Romanian Myasthenia Gravis Info Centre +40 744704399  –  asociatia.miastenia@gmail.com
Serbia * NORBS +381 800333103  –  office@norbs.rs  – www.norbs.rs/
Spain * SIO Feder +34 918221725  –  sio@enfermedades-raras.org
Switzerland * Infos Maladies Rares +41 848314372  –  contact@infomaladiesrares.ch
Switzerland * Seltene Krankheiten +41 442663535  –  selten@kispi.uzh.ch  –  www.kispi.uzh.ch
USA GARD Genetic and Rare Diseases Information Center +1 8882052311
Wolrdwide ThinkGenetic https://www.thinkgenetic.com/

medical advice from Genetic counselors :  https://www.thinkgenetic.com/contact-counselor