ERN-Skin e-News 


ERN-Skin webinars


Save the date!


The complete webinar on Ichtyosis is online!


You can find the exhaustive calendar of the next webinars via this link: 




September 12-19, 2021 - 1st ERN-Skin Exchange between Riga and Rome!

Thanks to the support of the European Commission, a team of the Children’s Clinical University Hospital from Riga (Latvia) will visit the Ospedale Pediatrico Bambino Gesù (Rome, Italy) for a week in September. The objectives of this 1st ERN-Skin exchange are to improve the management of patients with epidermolysis bullosa, to further develop the organization skills of the multidisciplinary team, to strengthen links between 2 ERN-Skin healthcare providers and to participate in a better integration of affiliated partners within ERN-Skin’s activities.

September 14 to 16, 2021 - Third EJP RD General Assembly and Consortium meeting - Virtual

All EJP RD members are invited to register here to take part at the EJP RD GA meeting and receive all necessary information to connect to the sessions.

October 15, 2021 - Last day to respond to the patient satisfaction survey in 2021!

The patient satisfaction survey aims to measure the level of patient satisfaction after consultation in an ERN-Skin centre, in order to improve their quality of care and performance. This survey has been elaborated thanks to the Skin ePAG advocates. 

All questionnaires are permanently available on the ERN-Skin website: in 15 languages.

We would need your help to disseminate this survey to the rare skin diseases patient who had a consultation in an ERN-Skin health care provider

A global analysis of data will be done every year in November by the ERN-Skin coordination team. Each healthcare provider will receive its own scores individually.

Responses to the patient satisfaction survey are due by October 15.

October 21, 2021 - ERN-Skin Executive Committee Meeting - Virtual - Late afternoon

This meeting will get together the ERN-Skin general coordination team, the chairs of the executive committee and the 2 Skin ePAG representatives.

October 22, 2021 - Join the ERN-Skin Board Meeting! - Virtual - All day

This will be a unique day dedicated to

  • the meeting of the thematic groups
  • a state of the art regarding registry, SPOT App, e-training, webinars as well as European Commission projects on guidelines’ and exchanges’ programmes. 

June 7-9, 2022 - World Congress on Rare Skin Diseases - Welcome in Paris!

The ERN-Skin and the René Touraine Foundation are organizing the 1st World Congress on Rare Skin Diseases. We will bring together the medical and paramedical teams, scientists, patient representatives, policy makers, as well as industrial stakeholders. Our common goal is to improve patient care, develop collaboration and increase research! We are counting on you to join and share this new adventure!

You will soon get access to the Congress’ preliminary programme on its dedicated platform. Don’t miss the news!


Have a good summer


The ERN-Skin team wishes all of you a good Summer, and is hoping to meet you again in September.


Co-funded by the European Commission