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

EUROPEAN CONFERENCE ON RARE DISORDERS

European Conference on Rare Disorders (ECRD) on 14th and 15th May which gathered together over 1,500 people from 57 countries, was held online as many other event in 2020.

Even without face to face meetings and gathering it was a real success and we learnt so much.

EURORDIS ANNUAL GENERAL MEETING

Of course, during lockdown, many events and meetings have been cancelled or replaced with online meetings due to the health constraints. It was the case for Eurordis Annual Meeting on 13th May.

2019 had been a very fruitful year with so many opportunities to work and learn.

THE GOSPEL CHOIR SINGS FOR CLI

Shortly before lockdown, the Gospel choir had organized a masterclass and we were given the benefits. Cécile, together with her brother and her sister took part in this singing and joyfull afternoon.

CLI

AND ALSO IN 2019

11th  April :  The Annual General Meeting of France Assos Santé – Auvergne-Rhône-Alpes ( local federation of health organsiations) was held in Lyon. It was the opportunity to meet our friend Roger Picard, and many other members of the Federation.

29th November : We received the cheque from the  Triathlon of Sireuil

 

09th December : We met the Gospel Choir… some projects for 2020…

FRENCH FEDERATION FOR SKIN

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.