Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude Boiteux talks about “difference and psychological impact”
and here is how you can get subtittles in your own language
see you next week for episode N°3
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube Channel
Marie-Claude Boiteux explains what Cutis Laxa is and the different types.
It is in French, but here is how you can get subtittles in your own language
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received many patients’ and parents’ testimonies.
They are now collected in a newly published book :
« Cutis Laxa, Story of a Rare Disorder, Patients’ testimonies ».
It is available in French, English and Spanish. We will send it to you on request, at €25 per copy.
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)
Living with …. Cutis Laxa
The French monthly magazine “La Revue du Praticien” (The Medical Practitioner’s Journal) published an article on Cutis Laxa in its November issue.
Read the article here (in French)
CUTIS LAXA PATIENT JOURNEYS
We have developped 2 patient journeys based on testimonies from our members on what it is like to live with a Cutis Laxa.
Those documents aim to be a tool for health care professionals and patients during a consultation to help them agree on the best possible care on a long term basis.
They will be updated as often as needed to fit with the patients’ daily life and the most recent findings and treatments.
CUTIS LAXA WITH ARTERIES AND LUNGS SYMPTOMS
CUTIS LAXA WITH NEURO AND SKELETON SYMPTOMS
6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.
The European Commission, Patients and ERN Coordinators give their point of view
European Commission (in almost all European Languages)
https://audiovisual.ec.europa.eu/en/video/I-193046
Patients (in English and/or with English subtitles)
https://audiovisual.ec.europa.eu/en/video/I-191813
ERN Coordinators (in English and/or with English subtitles)
Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma
A possible improvment of the symptoms in Acquired Cutis Laxa associated with monoclonal gammapethy or multiple myeloma:
A haematologist from Sao Paulo (Brasil) has had very satisfactory results in two cases with an autolog bone marrow transplant.
For those two patients the results were more than encouraging though we certainly cannot talk about treatment or cure yet.
Many studies and therapeutic trials are still necessary to get there.
Nevertheless this is a huge leap for those patients
RESEARCH ON ACQUIRED CUTIS LAXA
A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr Bert CALLEWAERT
Center for Medical Genetics – Ghent University Hospital
De Pintelaan 185 – B-9000 Gent
Email : Bert.Callewaert@Ugent.be
This type of Cutis Laxa has never been studied before.
It is a great opportunity to learn more about it : how it appears, what are its causes and maybe a first step to treatment.
Worldwide patients with ACL can take part in it. The doors of hope are opening up for them.