The first half of the year was quite busy with Eurordis

On 12th May : Annual Members meeting

on 10th June : Annual General Meeting

Setting up RDI (Rare Diseases International), editing surveys on a regular basis (Rare Barometer), helping patient representatives in the European Reference Networks (ePags), European Conference on Rare Diseases (ECRD), advocating at the European (EC) and international (UN, WHO) levels, etc…

The actions led by Eurordis have changed, change and will continue to change the quality of life and care for people living with a rare disease in Europe and worldwide.

There is no lack of work.

Globalskin (International Organisation for Skin Disorders) held two events early this year

On 25th February : Webinar : « The Power of the Patient Community in the Rare Diseases Movement » with a great presentation from Dr Ségolène Aymé, first CEO of Orphanet.

On 3rd March : Structuring the European Community for Skin Disorders inside Globalskin.

 

Rare Disease International (RDI) Activities

Rare Disease International (RDI) organised several events in the first half of 2021:

On 14th January , Webinar : Key Issues for a UN Resolution for Rare Diseases :

Inclusion and Human Rights, Appropriate Care, National Stategies, Rare Diseases in the UN System, Monitor Progress and Implementation.

 

 

On 4th February, Webinar : « World Health Organisation Collaborative Global Network for Rare Diseases » (WHO CGN4RD) :

Implementation of  Universal Health Coverage from care to treatments; Expertise; Structured Activities under thematic « Programmes of care »; Exploit advancement in technology and innovation; Collaboration Plateforms ; Sharing networking expertise and global knowledge ; Research, clinical trials and registries.

 

 

On 25th and 26th May : RDI members meeting and Annual Report :

In 2020 RDI’s activities were equally internal, with webinars for its members and external with outreach to Permanent Missions to the UN in New York.

 

The aim is to promote Rare Diseases as a priority in International Policy and work towards a UN General Assembly Resolution for Rare Diseases with sustainable development goals.

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.