Rare 2030 conference update

On 23rd February : The European Commissioner for Health and Food Security, the French and Czech Republic Ministers of Health and Members of the European Commission opened the RARE 2030 Conference, gathering almost 590 attendees together. After two year of continuous work, Eurordis and the European Community annouced the 8 recommendations arising from this work. The future of rare diseases over the next 10 years starts now, comprising :

  • A European policy framework ;
  • Earlier, faster and more accurate diagnosis;
  • A highly specialised healthcare ecosystem ;
  • Guarantee the social and economic integration of people living with a rare disease;
  • Encourage the meaningful participation, engagement and leadership of people living with a rare disease;
  • Rare disease research is maintained as a priority;
  • Data is used at its maximum ;
  • Improve the availiability, accessibility and affordability of rare diseases treatments.

RARE 2030

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) 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.

“Hacking Health” Challenge in Lyon (France)

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.

20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

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