On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis held the “Rare 2030 Final Policy Conference”.
Over 1100 participants representing all stakeholders groups of the rare disease community took part in this event, learning, exchanging and celebrating together.
Find here the Rare 2030 Recommandations
Have a look at Rare 2030 website
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.
During three days (14th, 15th and 16th January 2021) we took part in a Health Projects Contest to “Bring Innovation to Healthcare”.
The name of our Challenge was “Rare Disorders : How to reduce the diagnosis odyssey”
We presented an application called “Unknown but Recognized” and even if we finish last, it was the occasion to meet young computer scientists willing to developp a diagnosis application.
We are still working with them and sincerely hope that they will succeed.
FFP has just issues its first e-book on :
“Cutaneous disorders and psychology”
The French Federation for Skin helps you and shares a few pages on patients’ psychological situation as well as advice and analysis from our psychologists. It aims to give some points to help live a better daily life with the disorder.
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.
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.
Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.
The European Commission, Patients and ERN Coordinators give their point of view
European Commission (in almost all European Languages)
https://audiovisual.ec.europa.eu/en/video/I-193046
Patients (in English and/or with English subtitles)
https://audiovisual.ec.europa.eu/en/video/I-191813
ERN Coordinators (in English and/or with English subtitles)