CUTIS LAXA : News

Italy – Leaflet new national rights in healthcare

Italy : The National Observatory on Rare Disorders (OMAR www.osservatoriomalattierare.it…
January 9, 2018/by sonja
cmgg-Pr Bert CALLEWAERT

Research on Cutis Laxa in Europe

ERN-Skin’s aims are, among others, to improve patients’…
January 4, 2018/by sonja
Welcome

We are happy to welcome the brand new members :

Laurie and Zachary, Charlotte, Addison, Andrei, Alexandra, Juan…
January 2, 2018/by sonja

EURORDIS published the results of the first European survey on the social impact of rare disorders :

According to this survey, rare disorders have a major impact…
January 2, 2018/by sonja

Luxemburg : First Information Meeting on the Future National Plan on Rare Disorders

It has been estimated that 30,000 people suffer from a rare disorder…
January 2, 2018/by sonja

China : Public Attitudes towards Gene Therapy

A study published in Molecular Therapy identifies public attitudes…
January 2, 2018/by sonja

Charente Libre « A woman with disabilities fights to get her hydrotherapy paid for by public health insurance »

21st December Charente Libre (French Newspaper): « A woman with…
December 21, 2017/by sonja
ERN logo

European Reference Networks and RD-ACTION are tackling challenges concerning Clinical Practice Guidelines

(Orphanews 2018.12.19)

RD-ACTION set-out to add value by working…
December 19, 2017/by sonja

Christmas Market in Cruseilles

9th and 10th December : SolHand and Cutis Laxa Internationale…
December 10, 2017/by sonja

Le Temps (Swiss Newspaper) : « Cécile, Fighting is in her Blood ». Interview/portrait

December 9, 2017/by sonja

Brin d’Aillet Run and Triathlon of Sireuil hand over a cheque to CLI

The organisers of the Brin d’Aillet Run and Triathlon…
November 29, 2017/by sonja

Charente Libre (French Newspaper) : CLI Receives the cheque from Brin d’Aillet run and Triathlon of Sireuil

November 29, 2017/by sonja

Dr Pascal Sommer took part in CNRS forum

Dr Pascal Sommer took part in CNRS (French National Centre for…
November 28, 2017/by sonja

European Commission launches its Horizon 2020 Health Research Programme 2018-2020 including rare diseases

(Orphanews 2018.11.28)

Within the call « Better Health and…
November 28, 2017/by sonja

Inter (National French Radio) Broadcast « Head squared »: interview of Dr Pascal Sommer presenting the CNRS Forum

Listen online
November 21, 2017/by sonja
2017-11-28-ERN Paris

ERN-Skin Meeting (Paris)

120 attendees, doctors, researchers and patient representatives…
November 20, 2017/by sonja

EURORDIS Launched a new network of European members of the Parliament lobbying for Rare Disorders

On October 17th, Eurordis, a non-government alliance for patients…
October 17, 2017/by sonja
handicap.gouv.fr/

The French government launched its official website dedicated to disability

On 5th July the French government launched its official website…
July 5, 2017/by sonja

New mutations (ATP6V1E1, ATP6V1A)

ATP6V1E1 or ATP6V1A, are the new mutations recently published…
July 1, 2017/by sonja

Petition ProRaris

ProRaris, Swiss Federation for Rare Disorders launched a petition…
June 30, 2017/by sonja
ERN skin

Patient representative for connective tissue disorders

When the European Reference Networks (ERN) was set up, The European…
June 24, 2017/by sonja
ERN skin

Patient Representatives’ role and responsibilities in ERN-Skin

Patient Representatives, gathered in the Patient Representative…
June 19, 2017/by sonja
Welcome

Welcome to our Big Cutis Laxa Family

Welcome to Lynne, Mohammed, Parker, Tracey, Theo, Jessie K, Sharon…
June 18, 2017/by sonja

Annual General Meeting & Conference of Solhand (Paris)

June 10, 2017/by sonja

Kick-Off meeting « ERN-Skin » (Brussels)

26th May - In Brussels, in one of the beautiful rooms of the…
May 26, 2017/by sonja

Article on the diagnosis odyssey that rare disease patients and families face in Australia

Orphanet Journal of Rare Diseases has published an article on…
May 15, 2017/by sonja

Katy & Cecile

April 19, 2017/by sonja

FRANCE is setting up the Mobility and Inclusion Card (CMI)

FRANCE is setting up the Mobility and Inclusion Card (CMI) to…
April 7, 2017/by sonja

(NGO) Committee for rare diseases in the United Nations

The first report of the Non Governmental Organisation (NGO) Committee…
March 23, 2017/by sonja

Channel 5 « Extraordinary People » – 15th February 2017

Broadcasting the report on Zara and her mother
February 15, 2017/by sonja

Dailymail.co.uk – 14 February 2017

Dailymail.co.uk Publishes a new article on Zara and her mother…
February 14, 2017/by sonja

Event Geneva (Switzerland)

February 10, 2017/by sonja

The National Rare Diseases Registry System of China (NRDRS)

CHINA recently launched its first nation-wide patient registry,…
February 4, 2017/by sonja
Annecy groupe 2016

5th Cutis Laxa Days 2016 (Annecy)

May 19, 2016/by sonja

Clinics Meeting in Pittsburgh (USA) – March 2016

March 19, 2016/by sonja

“Chocolate” weekend (France) – March 2016

March 5, 2016/by sonja