GLOBAL RESEARCH ON THE IMPACT OF DERMATOLOGICAL DISEASES (GRIDD)

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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…….

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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

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The Cutis Laxa “Patient Journey”

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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:

Cutis Laxa with lung and arteries symptoms

Cutis Laxa with neuro and skeleton symptoms

THEY LEFT THIS WORLD

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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

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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

Actualités

 

Welcome

NEW MEMBERS

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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

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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.

 

Podcast Pierre Fabre-Kapcode « How Social Networks can help better understand Patient’s experience

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Café Healthtech Podcast

25 – How Social Networks can help better understand Patient’s experience ?

After being left into the background for a long time, Patient’s experience has a more and more important place in health. We talk about interactions and emotions felt by  patients when in the health system. This experience, many patients share it online and especially on social media. The data gathered on social media can then be used by heatl stakeholders to better understand patients’ needs and expectations. With over 3,8 billions social media users worldwide, it is clear that these plaforms quickly became an important source of data

Listen to the podcast (in French)

Comment les réseaux sociaux permettent de mieux comprendre l’expérience patient ?

 

 

Inter-Organisations’ contribution to the Local Projects for Health (PRS)

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The French Federation for Skin (FFP), the French Society of Dermatology (SFD), the National Union of Dermatologists Venereologists (SNDV), the Network for Rare Skin Disorders (FIMARAD), the French Federation for Continuous Training and Evaluation in Dermatology Venereology (FFFCEDV), as well as the association of Future Dermatologists Venereologists in France (FDVF) pulled the communication cord :

Dermatology is on the brink, an alarming situation in France.  The WHO (World Health Organisation) has classified skin disorders as the 4th most impacting disorders regarding patients’ quality of life. Yet,  anywhere in French, skin disorders encounter an intersectional group of difficulties : No access to care in several regions, several months’ delay to get an appointment in town and in hospital, alarming medical and paramedical demography, therapeutic and diagnostic roving leading to loss of opportunities and refusal of care, social inequities in health, and more.

A recent study led in 316 Prefectures and Sub-prefectures (both local regional political and administrative centres) showed that dermatology is one of the first specialist area of medicine for which getting a first appointment is almost impossible.

Patients and their families feel like they are left behind et health professionals feel helpless when face with growing difficulties. Yet, in the past few years, dermatology treatments have seen a real revolution and should allow, with correct care, to cure many conditions efficiently and much earlier.

Despite these alarming findings, skin disorders are totally absent in today’s main local health priorities.  The coming review of the PRS is a unique opportunity to correct this omission and finally take into account the needs of the populations concerned.

Action must be taken urgently !

 

3 headings and 14 propositions are included in this contribution to turn this crisis around.

 

-1- Make access to care a Priority

     Train more dermatologists venereologists by increasing the number of interns in dermatology.

    Re-establish skin healthcare in hospitals in all French regions.

    Create the post of Advanced Practice Nurse (IPA) in all hospital dermatology departments.

    In areas where skin care is limited, encourage retired private dermatologists to pursue their activities for a few years beyond retirement age.

    Develop online dermatology expertise, and prioritise the worst regions where care is very limited or absent.

    Create positions for psychologists in hospital dermatology departments.

    Re-assess upward the complexity of skin treatments that nurses are allowed to deliver.

 

-2- Make dermatology care pathways more fluid

     Co-develop, together with health professionals and patient organisations, care pathways more readable and clarify the various levels of intervention (1st consultation, specialised care, complex care).

    Train « 1st step » health professionals in dermatology and provide them with the minimum equipment necessary (dermatoscope, biopsy equipment, online tools, etc.)

    Strengthen the co-ordination between 1st consultation and specialised care based on local measures and systems that were already well-tested (especially online expertise, specialised skincare teams)

    Reinforce the link town-hospital, especially supporting and increasing the fees for hospital consultations delivered by private dermatologists.

    Lead, with the support of patient organisation, advertising campaigns and awareness raising for patients to encourage them use the health system in a more responsible way :

o   reduce the number of missed appointments.

o   Limit the number of annual «  check-up » appointments for people who are not at risks or with no particular symptom.

 

-3- Provide greater support to health professionals and patients

     Support the deployment of medical assistants to give doctors more medical time for patients.

    Set up, together with professional organisations, a support system for health professionals facing working difficulties (preventing chronic work-related stress, work-life balance, etc).