Cutis Laxa Videos …… N°4

Today I talk about the impact of the disorder in adulthood: love life, finding a job, etc.

 

and you can get subtittles in your own language :

The French Federation for Skin published its plea

The French Federation for skin is publishing its plea aiming to :

  • Improve skin patients’ quality of life on a long term basis ;
  • Fight against social and local inequalities ;
  • Ease health journeys and carers’ work ;
  • Offer a global care respecting patients’ needs
  • Get patients’ expertise and role in the healthcare system recognised

read the plea here ( in French)

Painting contest

1st prize in the 14-18 age range.

The drawing competititon “Story of my skin” organised by the René Touraine Fondation received high quality works

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in France.

You can read here the whole study (in French)

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 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.

e-Book edited by the French Federation for Skin (FFP)

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.

Read (pdf in French)