2011 - France
The 2011 Together Against Genodermatoses meeting
was held on October 13-15.
It was organized by MAGEC - Necker, the national centre of expertise for genetic skin diseases
and Fondation René Touraine
at Necker - Enfants Malades Hospital in Paris
under the high patronage of the French Ministry on Health
The 2011 meeting programme
October 13: a satellite training course accredited by the European Accreditation Council for Continuing Medical Education
The course with the 2 round tables with international experts and patient associations were intended for specialists and paramedics willing to learn more about:
health care of patients with inherited epidermolysis bullosa
health care of patients with ichthyosis
15 grants were awarded for dermatology residents, nurses and patient repersentatives.
Training was in English and French.
October 14: a full day session focusing on the analysis of questionnaire
The coordinators of the working groups presented the "tips and hints" developed by patients and caregivers to help improve the daily life of patients with epidermolysis bullosa, Ichthyosis, Palmoplantar Keratoderma, Neurofibromatosis, Xeroderma pigmentosum, Ectodermal Dysplasia.
Recommendations for health care and social support are under preparation.
The coordinators of the transversal group presented proposals for collaborative projects. Eurordis presented their activities with a focus on online patient communities.
An international directory including available services and assessed needs is under preparation.
October 15: a morning session with Eurordis and Leem to discuss with the industry
Actavis, Astellas, Bioderma, Eucerin, Laboratoires La Roche Posay, Laboratoires Pierre Fabre, Mölnlycke Healthcare, Orfagen, Sinclair, Smith and Nephew, Urgo participated in this meeting.
The following issues were discussed :
solutions to improve access to medicines, cosmetics, medical devices and other products
grants for the training of specialists and nurses
any partnership focusing on patient needs
creation of a group of industries.
To see the full programme, please click here.
A questionnaire to share knowledge and experiences
To prepare this meeting, we invited health care professionals and patient organizations to answer a large suvey. Three sections covered:
« Tips and hints » developed by patients and caregivers to improve the daily life in these diseases.
Medicine, cosmetics, medical devices and other products required to improve patient care.
What you can bring and what you can expect from collaborative projects in the field of diagnostic, care, training, clinical and therapeutic research.
If you wish to participate to this survey, please send us an email.
The 2011 TAG educationnal grants
15 grants were awarded.
Specialists and paramedics responsible for genodermatoses consultations, patient reprenstatives could apply to the educational grant. They had to present a project focused on health care and social support of patients with severe and rare genetic skin diseases. Research projects were not eligible.
The applications were selected by the organizing committee of the 2011 meeting according to the following criteria:
the aim of the project: the project should aim at improving health care and social support of patients with severe and rare genetic skin diseases. The project had to take into account the daily needs of patients and of the health care providers.
the general context: the project should be adapted to your own country social and cultural context
the feasibility of the project: the project should be very practical and feasible with the available resources
the links with the main stakeholders and organizations who could help improving health care social support for genodermatoses patients such as NGO or/and associations of patients, public health authorities, specialists and paramedics, general practitioners, other teams and centers in you country or outside you country
The educational grant covered:
the registration to the meeting
the return-ticket on economic fare to Paris
3 nights in Paris (October 12, 13 and 14)
2010 - Italy
2010 working session
The 2nd TAG working session was be held in Rome on October 22nd and 23rd. The working session was organized by Ospedal Pediatrico Bambino Gesù.
On of the goal sof the meeting was to define the best available strategy for the management of each disease, in each country, focusing on patients’ daily life: health care, nursing care, social care will be taken into consideration.
As usual, the coordinators of each disease working group presented the results achieved by their own group. Moreover, the following topics were discussed and developed:
- summary of collected data in each country;
- progress in collecting epidemiological data;
- assessment of the needs of patients and the costs for patients;
- development of centers of expertise;
- creation of associations of patients;
- review of the management strategies for genodermatoses;
- development of a national and international network.
During this meeting some innovations have been introduced:
- a transversal working group has been created to focus on the development of the network of laboratories for diagnosis and genetic counselling.
- experts of genodermatoses, who are not members of the working groups, have participated in the meeting, and delivered lectures on recent advances in clinics and research of some diseases in their own countries.
- an inter-religious debate has taken place during the final round table on bioethics.
2010 working session presentation
2009 - Greece
2009 working session
The 1st TAG working session was held in Greece, on May 22-25, 2009. The meeting was organized by the Hellenic Society of Dermatology and Venereology of Greece under the auspices of the Ministry of Health of Greece and Social Solidarity and the National Kapodistrian University of Athens.
This meeting was held in the framework of the Together Against Genodermatoses project (TAG N°2007335) which has received funding from the European Union, in the framework of the Public Health Programme.
Each participant has presented the following information:
- the epidemiological data
- the progress in the assessment of needs of the patients and the costs for the patients
- the progress towards the development of centers of expertise
- the progress in the development of associations of patients
- the review of the strategies of the management of genodermatoses
- the developement of a national network
- the developement of collaborations on the European level
The 6 diseases working groups met:
- Epidermolysis bullosa group
- Ichthyosis group
- Palmoplantar keratoderma group
- Neurofibromatosis group
- Xeroderma Pigmentosum group
- Other genodermatoses group (Hypohidrotic Ectodermal Dysplasia, Incontinentia Pigmenti).
A new group was created, a transversal group: "Transsectional approach of genodermatoses for a preventive synergistic action”. One of the main tasks of this group is to develop a network of laboratories for diagnosis and genetic counselling.
The objectives of the 1st TAG working session were:
- Confirm the names of people engaged in the project
- Collect the state of art in each involved country
- Establish the different problems and difficulties of each country
- Set up together a common program of work to:
- Review and evaluate the existing initiatives
- Involve more people on the entire territory and promote the constitution of a national network
- Spread the information in each country
- Constitute a national multidisciplinary task force and a coordinator for each genodermatose
- Set up contacts and relationships with the association of patients
- Promote educational programs and working sessions specific on genodermatoses for medical and paramedical personnel, psychologists and social workers
- Create specific websites, newsletters, …to share the information in the country and with the other participating countries of the project
- Promote national and international collaborations to guarantee the diagnosis and the more qualified treatment for the patient
- Presentation of Egypt Yasmin
2008 - Morocco
5th Genodermatoses in Mediterranean working session
6 - 7 June 2008
June 6 (morning) : Experts talks for Moroccan specialists, health and social affairs authorities, the « Genodermatoses in Mediterranean » partners
June 6 (afternoon) and June 7 : « Genodermatoses in Mediterranean » partners discussed:
- Progress of health care and social support in each participating country
Participants of each country presented the 2007-2008 actions (diagnosis, specific health care, home health care, treatments, health care training, school and social integration, etc.) to improve the quality of health care and social support for the patients and families suffering from severe genodermatoses.
- the best health care strategy for each group of patients in each country
Working group 1: epidermolysis bullosa
Working group 2: severe ichtyosis
Working group 3: palmoplantar keratoderma and mal de Meleda syndrome
Working group 4: xeroderma pigmentosum
Working group 5: neurofibromatoses
Working group 6: other severe genodermatoses
2007 - Egypt
Each year, a working session gets together the partners in the project. The 2007 working session took place in Alexandria on April 27 and 28, organized in partnership with the Alexandria Society of Dermatology and the co-coordinator of "Genodermatoses Network" in Egypt, Dr. El-Gamal.
The 2007 working session was under the high patronage of
Mr. Amr Moussa, General Secretary of the League of Arab States;
Mr. Hatem El Gabaly,
Minister of Health and Population, Egypt;
Mr. Adel Labib, Governor of Alexandria;
Mr. Philippe Bas, Minister of Health and Solidarity, France;
Mr. Mohamed-Cheikh Biadillah, Minister of Health, Morocco;
M. Amar Tou, Minister of Health, Population and Hospital Reform, Algeria;
Mr. Mohamed Ridha Kechrid, Minister of Public Health, Tunisia;
Mr. Abdul Kareem Rasee, Minister of Health and Population, Yemen;
Mr. Hamad Bin Abdullah Almanee, Minister of Health, Saudi Arabia.
The working session was supported by the Laboratoires Pierre Fabre, the Ministry of Foreign Affairs, France; Les Entreprises du Médicament (Leem), France; the Ministries of Health of Algeria, Morocco, Saudi Arabia, Tunisia and Yemen.
This working session got together the representatives of 11 partner countries (Algeria, Croatia, Egypt, France, Greece, Libya, Morocco, Saudi Arabia, Tunisia, Turkey, Yemen) with the involvement of 2 new partners countries: Saudi Arabia and Turkey. Cyprus, although not in Alexandria, joined "Genodermatoses and Mediterranean" in 2007.
This working session got together dermatologists, geneticists, pediatricians, representatives of patients and civil society, public health officials.
2006 - Tunisia
This work session was the occasion for each participant to see the significant work done in each country on 2005-2006.
These significant actions allow to go on our common action towards several goals discussed all together and including :
- free care for the patients (the solution in many countries seems to include genodermatoses in larger public health programmes)
- setting up of task forces to discuss guidelines for diagnosis and health care,
- training of the staff involved in early diagnosis and community care,
- thinking about access to medicines and medical devices.
The participation, this year, of Mrs. Hanaa El-Sadat (Egypt), mother of Yasmin, is a great hope to see the continuity of the development of support association for patients suffering from severe genodermatoses.
2005 - Lebanon
2nd working session
The 2005 working session has been organized by Saint Joseph University, Beirut, Lebanon on May 26 and 27.
The subject of this working session was: "Promoting the creation of national networks ensuring medical treatment and social protection for patients suffering from severe genodermatoses: the current situation, the needs of patients and their families, problems encountered, solutions proposed".
This work session was under the auspices of:
- Mr. Amar Tou, Minister of Health (Algeria)
- Mr. Philippe Douste-Blazy, Minister of Health (France)
- Mr. Masoud Pezeshkian, Minister of Health and Medical Education (Iran)
- Mr. Francesco Storace, Minister of Health (Italy)
- Mr. Mohamed Cheikh Biadiallah, Minister of Health (Morocco)
- Mr. Ridha Kechrid, Minister of Public Health (Tunisia)
- Mr. Sadok Korbi, Minister of Scientific Research,Technology and Expertise Development (Tunisia)
Contents of the 2005 working session report
- Our goal
- Severe genodermatoses
- Executive summary
- Innovative national approaches
- Conclusions and outlooks
Conclusions and outlooks
Genodermatoses and Mediterranean, an opportunity and a strong commitment
- to work together in the countries of the Mediterranean and of the Middle-East
- to improve medical care and social protection for patients suffering from severe genodermatoses and their families
Severe genodermatoses, a public health challenge
- a medical and social handicap
- a curse for the families
- varying and complementary approaches in each of the countries of the Mediterranean and of the Middle-East
Actions relying on a wealth of national expertise in order to:
- improve the quality of care
- inform and educate patients and their family as well as caregivers
- encourage the development and of patients’ associations
- support research
- reinforce national projects through international collaboration
In order to ensure optimal care and management of patients and their family, it is imperative to:
- ensure management of care, medicines, medical devices and transportation
- offer community-based care
- ensure early and rapid diagnosis
- propose a multisdsciplinay approach to healthcare
- facilitate access to medicines
- promote social integration
- educate and inform
- support research on new therapies
Innovative responses meeting the needs of the patients and their families
- build work groups on the national level associating physicians, biologists and public health officials
- establish national registrers for severe genodermatoses
- obtain recognition for severe genodermatoses as chronic diseases or/and handicaps
- promote intervention programmes suited to each country
- build on existing structures/care networks/associations
- make treatment guidelines/protocols available to caregivers, organize hands-on training
- establish an international distribution facility for medicines and build ties with the pharmaceutical industry to improve access to medicines
- reinforce collaborative efforts for care, training and research
May 2006 in Tunisia
- assemble work groups comprised of public health officials and physicians in each country
- evaluate the actions implemented on the national level in 2005-2006 to improve the quality of care for these patients and their families
Read the report of the 2005 working session
2004 - Algeria
The Génodermatoses et Méditerranée project has been submitted, on Laboratoires Pierre Fabre’s initiative, with the First Global Forum on Sustainable Development held in Paris on November 27, 28 and 29, 2003.
Professor Redjimi, Algerian Health Minister who took part to the workshop, proposed to contact Health Ministers as well as Presidents of Scientific Societies from the countries potentially involved in the project in order to organize a meeting in Algiers in February 2004.
Initially planned on February 27-29 2004, this meeting finally took place on February 14-15 within an even more adapted occasion: the euro-mediterranean meeting on health, EUROMED 2004.
The main goals of this meeting, under the high patronage of Mr Abdelaziz Bouteflika, President of the People’s Democratic Republic of Algeria, were "to exchange the international experiences in the various fields of health, to set up networks between the civil society and the European and Mediterranean national institutions, specialized in the various fields of health, to achieve the institutionalization of this meeting as a euro - Mediterranean space having to support the global and built-in approaches in the various fields of health".
Six thematic plenary sessions and twelves round tables were organized.
Recommandations of the Genodermatoses and Mediterranean session
1. Creation of a national pole of reference for prevention and welfare of patients suffering from genodermatoses
This pole has to put together existing skills and facilities. It has to gather together means to face patients and their families’ needs
It has three missions:
- education, information, teaching
It works in connection with an international network through:
- an international scientific board
- a teaching hospitals’ network
It is dedicated to the citizens through a national healthcare network
2. 100% medical cover for patients with genodermatoses
100% coverage, in the chronic diseases framework, for patients suffering from severe genodermatoses is urgent. It should also include transportations, emollients, sunblocks, sunglasses, bandages etc…, according to pathology.
Prof. Redjimi, Algerian Health Minister, proposed to support this issue.
3. Creation of an international medecine’s bank for genodermatoses
It would be interesting to create an international medecine’s bank for genodermatoses implying international organizations and pharmaceutical industries
Precisions regarding the pole of reference’s organization
This pole has 3 missions:
In a hospital associated with a medical school:
- specialized consultation -possibly in various fields-
- a day hospital for a/ diagnosis, b/ specific healthcare, c/ medical education
- specialized beds
- in-home care in collaboration with general practitionners
This department must be at the heart of a teaching hospital gathering all the necessary medical specialities for the healthcare of patients suffering from genodermatoses.
The implied medical specialities would be dermatology with the help of geneticists, ear nose and throat specialists, pediatricians, gynaecologists, urologists, ophtalmologists, oncologists, surgeons (plastic and maxillofacial surgery), gastro-enterologists, nephrologists, radiologists, radiotherapists, dentists, nutritionnists, etc.
This multi-field approach coordinated by the dermatology must lead to :
- consensus conferences with set up and evaluation of protocols of care
- multidisciplinary staffs adapted to the pathology
The dermatological team must be supported by:
- nurses (for healthcare and training)
- social workers
- psychologists for the patients and their families
- occupational therapists
- pain specialists
- palliative care specialists
A biological platform specific to each country must provide:
- cutaneous anatomopathology
- electronic microscopy
- antenatal diagnosis
A therapeutical coverage:
- Emollients, compoundings, bandages, retinoids, imiquimod, antibiotics, antiviral, nutritional supplements, antispetics, sunblock, photoprotection equipment, medical supply, wheel chairs, etc.
- Equipment of surgical dermatology: cryosurgery, laser, etc
A secretaryship must:
- follow-up patients
- animate healthcare networks in coordination with regions
- organize a national observatory of genodermatoses
- animate international collaborations
School insertion and adapted educational leisures, social and professional integration must be taken into account
2. Education, information, teaching
National and decentralized specific education
- health personnel: doctors (dermatologists, perinatologists, pediatricians, GP, gynecologists, etc.), nurses, psychologists, etc.
- communication professionals
- patients and their families in narrow partnership with associations of patients
- International exchanges
- Inter-hospital collaborations
- Inter-universities collaborations
- New technology: Internet
Setting up a genodermatose’s record with the help of the societies of dermatology and the societies of pediatric dermatology
Clinical research :
- Healthcare evaluation
- Consensus conference
Diagnosis confirmation and setting up of DNA or cells bank
- When gene is unknown, connection study then gene’s identification
- When gene is known, antenatal diagnosis, mutationnal profile in each country, epidemiologic study, phenotype/genotype
Study of the proteinic expression of normal and transferred genes
Setting up and evaluation of new therapeutic tools
Adaptation of prevention to culture
on rare skin diseases
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