FIMARAD – ANNUAL MEETING
25th-26th November
FIMARAD (French Network for Rare Skin Disorders) Annual meeting
the results of the different workgroups showed the improvments still needed.
ERN-Skin EXECUTIVE COMMITTEE
23rd November 2021
ERN-Skin Executive Committee
Taking stock of the actions and improvements achieved in 2021.
Online training courses, using the CPMS consultation platform,
setting up registries and specific activities for each thematic group were the strong points for ERN-Skin.
ePAGS ANNUAL MEETING
4th-5th November
All ePAGS joint annual meeting with Eurordis to help each other
and improve their patient representatives’ work in the ERNs.
These two days of hard work allowed us to establish the priorities that need to be improved
PINK OCTOBER AND BLUE WALK
26th September 2021 , 3rd, 9th and 16th October 2021
As part of Pink October, dedicated to breast cancer and as part of the Blue Walk, dedicated to elderly people,
Bons en Chablais’ local Council organised several events
that allowed CLI to collect over € 1,000. Thanks to all of you.
GLOBALSKIN ANNUAL MEETING
29th September 2021 : Globalskin Annual Meeting.
The International Alliance of Dermatology Patients’ Organisations (IADPO), known as Globalskin, was set up in Canada.
It has grown a lot
and allows to share efforts worldwide for patients’ improved quality of life
.
ERN-Skin Activities
19th February : First ERN-Skin Scientific Day
114 doctors and researchers attended. Each thematic group presented the work done on the disorders they are concerned with.
For the Heritable Connective Tissue Disorders (HCTD), a study is taking place in the Netherlands to evaluate prevalence and severity of fatigue, pain, disability and global health for children and teenagers suffering from the most common HCTD.
Other topics were presented such as interconnections between nervous system and skin system, and also innovative methodologies
8th June : ERN-Skin Executive Committee
During this meeting the agenda was very fully.
Marie-Claude Boiteux presented the epags’ work on « Patient Journeys » for each disorder concerned by ERN-Skin,
And then the Patients Satisfaction Survey, Registries,
e-learning,
the SPOT application,
Exchange programme,
Results of 2020
and organising, in Paris in 2022, the next Rare Skin Diseases World Congres –
these wide ranging questions showed ERN-Skin’s dynamism and how it implements concrete projects.
workgroups, training and information for Patient Representatives (ePAGS
On 18th March
« Good Practice : How to measure results, What is Quality of Life, How to build up a survey, …»
On 9th June
ePAGS Steering Committee meeting
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.
