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
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
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.
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.
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.
On 2nd october 2020, ERN-Skin held its annual Board meeting, online, due to the pandemic. We missed individual discussions but appreciated the very interesting presentations:
2020 success and clinical practice guidelines
Covid-19 observational study SPOT 2021 steps
Cutis Laxa success
Patient Representatives work in 2019/2020
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 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 (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.
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.
