Prof. Dr. Uwe Kornak, MD (Göttingen, Germany): The Secretory Pathway, Glycosylation, and Cutis Laxa

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Secreted proteins and membrane proteins have to pass through the secretory pathway, which is not only responsible for the transport to the correct cellular compartment, but also for the maturation and modification of these proteins. A central part of the secretory pathway is the Golgi compartment, which consists of several « pancake-like » membrane sacks (cisternae).

One important modification is glycosylation, which has been found altered in a whole group of Cutis Laxa disorders, that are also named congenital disorders of glycosylation (CDG).

Mrs Aude Beyens, MD (Ghent, Belgium): Structural defects of Connective Tissue Proteins and CL

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Elastic fiber assembly, or elastogenesis, is a complex process that is precisely regulated in a spatiotemporal manner and depends on proper growth factor signaling and mechanosensing.

 

The underlying molecular defect in cutis laxa syndromes affect the synthesis and/or association associated extracellular matrix proteins.

Prof. Gerhard Sengle (Köln, Germany): Matrix Biology – What can we learn from animal modelling ?

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Understanding how the fine tune mechanisms of elastic fibers formation is perturbed in the different types of Cutis Laxa is crucial to design molecular therapies in preclinical trials using animal models.

Other Events in 2022

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1st February: Pharmaceuticals Seminar

10th April : Our Little Stars” stall and entertainment

6th July : Pierre Fabre Contest, Marie-Claude Boiteux was a member of the Grand Jury that awarded the Price of the Best Patient-Centered project presented by the international chapters of the Pierre Fabre Group.

30th September and  1st October :  CHAM 2022 gathered together all stakeholders of tomorrow’s health : Politicians, Health Professionals, Institutional bodies, Pharma Industries and Patient Organisations.

CLI at the Dermatology Days of Paris

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29th November – 3rd December 2022 :

Dermatology Days of Paris (JDP).

Pr Dupin opened the  « Associations’ Village ».

This year, CLI not only had a  stall,

but we also took part in « Canal JDP » for a cross-interview with Pr Ludovic Martin « Cutis Laxa : Hope for the patients ».

Watch the video here

And our poster was also part of the official exhibition.

Canal JDP

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On 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”:

 

4th Conference of the French Federation for Skin (Report)

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29th November 2022 :

4th Conference of the FFP on the theme « Health Journey in Dermatology »

Pr Dupin, Chair of the French Society of Dermatology (SFD) and Pr Beylot-Barry, presented the challenges and prospects, further developped by Dr Sulimovic, Chair of the National Union of Dermatologists-Venereologists (SNDV), specifically regarding access to dermatologists in town (rather than in hospital). For this part, Pr Bodemer focused on issues regarding Paediatric Dermatology.

 

We ended the morning with a roundtable dedicated to “Holistic care of the Patient”.

We spent the afternoon in workshops to reflect on the synthesis of local meetings organised around the review of the Local Projects for Health.  A great, rich, participative and interesting day, as speakers and attendees said in their comments.

And the next day we opened the FFP Stall for the Paris Dermatology Days

 

FIMARAD ANNUAL METING

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24th & 25th November 2022 :

National and Scientific Days of the FIMARAD network for rare skin disorders.

 

Besides the important progress made by the network’s members, together with patient representatives in the workgroups,

it was the opportunity to strengthen the collaboration between FIMARAD and the French Federation for Skin (FFP).

DERMATOLOGY DAYS OF PARIS

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1st, 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.

French Health Minister’s message

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30th November

The 3rd Conference of the French Federation for Skin was opened by Mr Olivier Véran, French Minister of Health and Solidarity. Convinced that democracy is necessary in health issues, he recognised the quality of the FFP advocacy and the real obstacle course its 21 member organisations can face.

Watch his message here (in French) : https://www.youtube.com/watch?v=Bvm0lmixr7E