Vaccination advices

A vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simuA vaccination campaign against SARS-CoV-2 (COVID-19) infection has been organized at EU level in all European countries simultaneously.

There is no reason for people with rare disease to avoid vaccination against SARS-CoV-2. Vaccination is important to protect the whole population as well as patients with rare skin diseases, although ultimately it remains the personal choice of each individual.

We particularly encourage vaccination for patients with disorders which may affect the immune system making complications of COVID-19. The currently available “mRNA vaccines” are dead vaccines and should not pose a risk to patients with immune deficiency and those undergoing immunosuppressive treatment.

Depending on the availability of other types of vaccines, in the future, new recommendations may be necessary.

Mendelian connective tissue disorders

There is no contraindication to vaccination against SARS-CoV-2 for patients with Monogenic connective tissue disorders.

Vaccination against COVID19 is important for the whole population including patients with connective tissue disorders. Although vaccination remains the patient’s choice, as it is the own choice for any citizen.

It could be strongly recommended for patients with connective tissue disorders, particularly for those with bad general condition, severe vascular and/or important lung involvement.

For detailed advice, don’t hesitate to contact the specialist who ensures your medical follow-up by email, fax or telephone.

©https://ern-skin.eu/vaccination-advices/

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)

https://audiovisual.ec.europa.eu/en/video/I-191812

RARE SKIN DISORDERS AND COVID-19 : An observationnal study

RARE SKIN DISORDERS AND COVID-19

An observational study was initiated by the European Reference Network ERN-Skin and the French Health Network for Rare Skin Disorders (FIMARAD) :

« COVID-19 and rare skin diseases. European observational study (data research) during an epidemic”.

It concerns paediatric and adult patients with rare skin diseases and suspected or confirmed COVID-19 infection who consulted a medical team that is part of the ERN-Skin or FIMARAD. Professor Christine BODEMER (Hôpital Necker-Enfants Malades – Paris, France christine.bodemer@nck.ap-hop-paris.fr ) is the principal investigator..

The main objective of this European observational cohort study (research data) is to determine the impact of a COVID-19 virus infection in a cohort of patients with rare skin diseases and particularly whether these rare diseases and their treatments are risk factors of infection severity

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

cmgg-Pr Bert CALLEWAERT

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.

ERN-Skin Board Meeting

On 2nd october 2020, ERN-Skin held its annual Board meeting, online, due to the pandemic. We missed individual discussions but appreciated the very interesting presentations:

2020 success and clinical practice guidelines

Covid-19 observational study                          SPOT 2021 steps

Cutis Laxa success

 

Patient Representatives work in 2019/2020

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.