Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)

During the 5th annual meeting of the French Health Network FIMARAD (Network for Rare Cutaneous Disorders), Marie-Claude Boiteux presented the ePAGs’ work for Patients in ERN-Skin (in French at 9:57)

Here is how you can get subtittles in your own language :

Paris Dermatologic Days (JDP)

We were able to attend the JDP online, so as to be visible  despite everything.

We had a space in the virtual “Associations’ Village” and our Poster was accessible online by any and all visitors

 

Nevertheless we sorely missed the opportunity for face to face meetings with representatives of laboratories to talk about our activities.

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

6th CUTIS LAXA DAYS

SAVE THE DATES

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

on 14th, 15th and 16th September 2022

 

All EPAGS ANNUAL MEETING

5th andt 6th November 2020 : Patient Representatives (ePAG) gathered together, as they do every year, to share improvements, difficulties and successes of their work in the ERNs.

Supported by the Eurordis team, this coming together shines a light on the benefits, but also the gaps, of the organisation of the ERNs.

As Enrique Terol, in charge of Rare Disorders issues at the Health Executive Board in the European Commission, explained, issues linked to gynecology,  pregnancy and family planning are not covered by any of the actual ERNS.

This annual meeting was also the opportunity to gain new knowledge/competencies to improve our work of patient advocacy.

1st Congress of the French Alliance for Rare Disorders

3rd November 2020 :  The first Congress organised by the French Alliance for Rare Disorders gathered together over 250 people. Elected representatives and Healthcare professionnals presented the opportunities, improvements and perspectives for rare disorders for the coming 10 years.

  

 

The subjects of lively workshops were ; Access to diagnosis; Access to treatments and Improving the life journey. To improve patients’ quality of life depends on improving the relationship between local and hospital professionnals.

 

 

ERN-Skin Annual Board Meeting 2020

2nd October 2020 : ERN-Skin annual Board Meeting was a great success : 4 new affiliated partners joined, coming from 4 countries not yet represented in our ERN ;

the results of the ongoing work,

and especially the annoucement that Cutis Laxa is one of the 10 disorders selected by the coordinators of the subthematic groups that will be prioritized for the developpment of clinical practice guidelines/clinical decision tools-

these show show the dynamism of ERN-Skin.

The patient representatives (ePAGs) presented their work too, especially the « Patient Journey » for several of the disorders concerned by ERN-Skin.

 

“SUMMER MUSIC” IN FANTASIA PARK

7th August : After several months in lockdown, it was a real pleasure to participate in the « Summer Music » evening in Fantasia Park in Annemasse (France).

Respecting all sanitary recommendations we were able to welcome people at our stall where they could find, besides our now usual sausages and french fries, information on Cutis Laxa as well as various jewellery and items we sell.

 

A very friendly evening which allowed us to get some funds, more than welcomed with all our other scheduled events being cancelled.

RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING

Rare Disease International (RDI) Annual Meeting and Conference, was held on 19th May, online as many others. Here are some screenshots of that important event we attended online from CLI’s home/office.

RDI and WHO : Universal Health Coverage and Rare Diseases

ORPHACODES : Universal name for each disease

RDI Action Plan 2020-2021

Rare Disease Patients and Covid-19