Rare Revolution Magazine
in its summer 2023 issue, Rare Revolution Magazine
published an article about Dave Jacob
Have a read
Japan: Recent advances in rare skin diseases
A new article has been published in the Keio Journal of Medicine providing an overview of recent advances in clinical research on rare hereditary skin diseases in Japan.
It shows efforts to uncover their pathogeneses, potential new treatment methods, current progress on establishing clinical practice guidelines and activities which have been undertaken to raise public awareness.
Collecting scientific evidence also aims to inform the creation and revision of evidence-based Clinical Practice Guidelines. (orphanews international 2023.07.26)
ERN-Skin eNEWS
In its June 2023 issue,
ERN-Skin eNews mentionned ePAG Advocates
attending Globalskin meeting “Elevate”
and those who were honoured with an award.
Have a read
GLOBAL RESEARCH ON THE IMPACT OF DERMATOLOGICAL DISEASES (GRIDD)
If you are a dermatology patient THIS IS VERY IMPORTANT
You are invited to take the GRIDD Survey now and share it with anyone who can take part!
On June 5, 2023, GlobalSkin, in collaboration with Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany), launched the Global Research on the Impact of Dermatological Diseases (GRIDD) Study.
Launched with the aim of engaging 10,000 participants, the GRIDD Study takes 10-20 minutes to complete and is accessible in 17 languages.
The data collected will help to validate the need for improved care, better treatment options, and more affordable medicine for dermatology patients globally.
The GRIDD Study is open until September 28, 2023.
AND ALSO…….
25th November 2022 : The Triathlon of Sireuil presented CLI with a cheque
24th January 2023 : Workgroup on recognising the value of the work done by volunteers
02nd February 2023 : Working on the French Local Projects for Health
14th February 2023 : Eurordis Black Pearl Awards
9th June 2023 : European Workgroup on Pregnancy and Family Planning
22nd June 2023 : BMS SpotInfoPatients “From Patients’rights to how Patients can commit in the Health system”
26th June 2023 : Eurordis Webinar : Patient Partnership Framework in ERNs
:
The Cutis Laxa “Patient Journey”
The “Patient Journey” seeks to identify the needs that are
specific to individual syndromes. To achieve this, patient
representatives completed a mapping exercise of the needs
of each rare inherited syndrome they represent, across the
different stages of the Patient Journey.
This is the definition of the Patient Journey as mentioned in this article published in 2019.
This is an important work and we established the Cutis Laxa “Patient Journey”.
Cutis Laxa being such a complex disorder, with several subtypes and various associated symptoms, we could not have just one Cutis Laxa “Patient Journey”. We gathered together associated symptoms of the different subtypes and ended with two groups of subtypes.
Here are the results for the two “Patient Journeys” for Cutis Laxa patients:
THEY LEFT THIS WORLD
It is with deep sorrow that we learned that Chiara, in Italy, and Dave, in UK, passed away.
For both of them, lung issues due to Cutis Laxa got the better of their energy and will to fight. Chiara was supposed to attend the Days in Ghent and Dave had attended the Days in Annecy. We send their families our thoughts and condolences, as well as lots of courage to face this hard time.
Articles of the French Federation for Skin
Twice a month, the French Federation for Skin publishes (in French) an new article on global issue of skin and dermatology.
Go and Have a look from time to time
NEW MEMBERS
Mc Kenna Rose, Magali, Ezra, Hudson, Amelia, Maui Rose, Julie, Lennox, Aaxel, Eric and Harlyn joined us since the biginning of the year. A new country was added : Dominican Republic
There are now 533 patients gathered together and allowed to share their distress, their questions, but also their challeneges and successes living with Cutis Laxa. We are here to help them.
Patient Representatives at Globalskin Meeting
1st – 2nd June 2023
International Alliance of Dermatology Patient Organisation (IADPO-Globalskin)
held its “Elevate Conference 2023” in Brussels
Such a pleasure to meet again face-to-face …. at last ….
Worlwide Patient Organisations were represented for two days of work and great times together.
Here are some of happy times we had before we publish the report of all our hard work.
