The first half of the year was quite busy with Eurordis

/in , , , /by

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.

Cutis Laxa Videos ……… N°8 ……. last one

/in , , , /by

Here is the 8th …..and last…..of our videos

“Advice and support : “we are here !”” …  this is my conclusion

and also how we, parents, can help our “different” children.

I hope you enjoyed those videos.

you can find the 8 videos on the playlist :

 

and don’t forget you can have subtittles in your own language

Cutis Laxa Videos …. N°6

/in , , , /by

Let’s watch the 6th episode of our videos about Cutis Laxa.

Today :  the difficulties with the administration (in France but maybe same issues in other countries) and how CL patients must sometimes struggle to get their rights respected.

 and don’t forget you can get subtittles in your own language:

 

Cutis Laxa Videos …… N°5

/in , , , /by

Today’s topic is our organisation “Cutis Laxa Internationale” celebrating its 20th anniversary on 11th November 2021

 

and how many CL patients are there worldwide as of today (April 2021)

Remember you can get subtittles in your own language

Cutis Laxa Videos …… N°4

/in , , , , /by

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

/in , /by

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

/in , /by

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

/in , , /by

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

/in , , , /by

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

/in , , /by

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.