Daily newspaper « Charente Libre » : The Triathlon of Sireuil presented CLI with a cheque
/in In the media, News /by Marie-ClaudeCanal JDP
/in In the media, Meetings, Events and Exhibitions, News, Research - Medicine - Genetics, Video /by Marie-ClaudeOn 3rd December 2022, during the Dermatology Days of Paris (JDP),
organised by the French Society of Dermatology,
Marie-Claude Boiteux interviewed Pr Ludovic Martin for “Canal JDP”:
Weekly newspaper « Télé7jours » : Sophie Davant remembers the 10th Cutis Laxa patient discovered during Telethon 2001.
/in In the media, News /by Marie-ClaudePublic.fr : Sophie Davant, French journalist, tells how the Telethon 2001 supported the first research on CL
/in In the media, News /by Marie-ClaudeJournal Radiorg (Belgium)
/in In the media, News /by Marie-Claude28th February 2022 :
Grand Angle : Journal Radiorg (Belgium)
Testimony with Amber’s mother on the occasion of Rare Disease Day
La Gazette Bonsoise
/in In the media, News /by Marie-ClaudeWinter 2022 :
La Gazette Bonsoise : Associations’ Life : Cutis Laxa Special
NEW MUTATIONS
/in Mutations, News, Research, Research - Medicine - Genetics /by Marie-Claude4 new genetic mutations were recently found:
LOX : This gene of the 5-Lysyl oxidase family is involved in initiating of cross-linking of Elastin and Collagen. The mutation leads to cardiovascular, respiratory and bone symptoms, especially fractures. This is why it was initially considered to be a new type of osteogenesis imperfecta (glass bones disorder). But the discovery of fragmented elastic fibers allowed this mutation to be included in Cutis Laxa Syndroms. It is a recessive form.
EFEMP1 (Fibulin3): The consequences, besides lax skin, of this mutation are multiple hernias and joint hypermobility as well as mild intellectual/learning disability. It is a new recessive type of Cutis Laxa.
LTBP1 : This mutation is distinguished by lax skin, inguinal hernias, craniofacial dysmorphology, various heart defects and prominent skeletal features (short stature, brachydactyly, craniosynostosis,..). It is another new recessive type of Cutis Laxa.
PI4K2A : This 4th new mutation is characterised by the following clinical signs : lax skin, involuntary movements (neurological issue), dysmorphism and intellectual/learning disability. It is also a recessive type.
A 5th new mutation has recently been found and we are longing for it to be published so we can tell you about it.
Thanks to all the researchers for their amazing work in basic knowledge of Cutis Laxa. All these findings are essential to give patients better care and offer them a better quality of life.
ERN-Skin : Cutis Laxa Webinar
/in News, Research, Research - Medicine - Genetics /by Marie-Claude14th December 2021
Pr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared the latest results of the work done by the Mendelian Connective Tissue Disorders thematic group in ERN-Skin.
Especially regarding the latest finding on Cutis Laxa Syndroms. The classification is still in progress.
DERMATOLOGY DAYS OF PARIS
/in Meetings, Events and Exhibitions, News, Photos, Research - Medicine - Genetics /by Marie-Claude1st, 2nd & 3rd December 2021
For the first time this year we had a stall during the Dermatology Days of Paris.
With its conferences, pharmaceutic and cosmetic laboratories stalls, Associations’ village,
and e-posters, there’s no need to demonstrate the richness of those days.
It was the opportunity for many exchanges with health professionals as well as with association leaders,
all concerned by dermatology.