ERN skin Coordinator: Prof. Christine Bodemer

Slides:



Advertisements
Similar presentations
¨ Dr Alain Garcia General Secretary of the Rare Diseases National Plan The second National Plan for Rare Diseases in France
Advertisements

Learning from the past – Setting out the future Daniel Marsden – RCN Learning Disability Forum.
HAE Canada Bringing HAE patients together to learn and share.
Mission-Based Management November 2005 Electronic CV System Users Group.
Rare Diseases Working Group Luzern, 24 September 2010.
Rare Diseases Foundation Céline Hubert Pr Nicolas Lévy
PARIS21 CONSORTIUM MEETING Paris, October 2002 Progress Report of the Task Team on Food, Agriculture and Rural Statistics  Objectives  Past activities.
Information network on rare cancers RARECARENet Annalisa Trama, Gemma Gatta Fondazione IRCCS Istituto Nazionale dei Tumori, Milan (Italy)
Zagreb 5 June 2014 WHO EU & HPH Network Prof.Dr. Antoinette Kaic-Rak WHO Croatia Country Office.
Criteria for Centres of Expertise for Rare Diseases in the EU following EUCERD Recommendations RARECARENet Project: Consensus meeting on.
Paediatric Palliative Care and Policy Development Dr Chantal Wood Chair EAPC Paediatric Taskforce National Health Ministry PPC Taskforce Head of the Paediatric.
Promoting patient-centred healthcare around the world Patient Engagement in Patient Safety Jolanta Bilińska Secretary and Governing Board Member IAPO President.
Dr. José M. Millán, PhD Deputy Director of CIBERER Universitary Hospital La Fe, Valencia, Spain Barriers and Challenges in Rare Diseases Research Centre.
EURO-HSP General Assembly and Annual Meeting May 31 – June 1, 2015 Madrid, Spain Euro-HSP - GA May 31 / June 1 - Madrid, Spain 1.
Lyndi Wiltshire DEN steering group May  What we should expect  The changes in the NHS and the impact it will have on the diabetes educational.
Welcome to SURF 09 Involving Patients and the Public in HCAI Research.
SHAs Leads Network Meeting Professor Steve Barnett Interim Chief Executive Officer The Academy for Healthcare Science.
A major step towards a Europe for Health Directive on patients’ rights in cross-border healthcare DG SANCO D2 Healthcare Systems.
European Union Network for Patient Safety and Quality of Care BMJ Forum. Paris. April 10, 2014 Good Organisational Practices for Exchange Mechanism Work.
A major step towards a Europe for Health Directive on patients’ rights in cross-border healthcare DG SANCO Unit D2 Healthcare systems.
Special Needs Plans Models of Care SNP Educational Conference Baltimore, MD January 13, 2014 Susan Radke, MCAG Division of Policy, Analysis, and Planning.
Orphanet Europe State of the Art of Database and Services Polish activity Orphanet Europe State of the Art of Database and Services Polish.
Dr. Maria-Carme Torras i Calvo Chair, IFLA Information Literacy Section Dr. Sharon Mader Secretary, IFLA Information Literacy Section Global Partnerships.
The Maruzza Lefebvre D’Ovidio Foundation Silvia Lefebvre D’Ovidio.
Join the Neurocritical Care Society NCS Membership Benefits – Neurocritical Care journal subscription, including electronic access – Discounted Annual.
European Donation & Transplant Coordination Organisation The Donation & Procurement Section of ESOT and
Volservnet Voluntary Services and Networking A project in collaboration with the Ministry of Health, the Elderly and Community Care.
EURORDIS Eurordis Position on Research Priorities for Rare Diseases.
EARIP Stakeholder Workshop Models and healthcare systems: transferability of best practice across Europe Dr. Aurélien PEREZ European Commission Health.
Corporate slide master With guidelines for corporate presentations Integrating Clinical Audit In Policy and Performance Systems
Reviewing Vascular Services Tuesday 4 th June 2013.
Adrian M Agius Meeting of UEMS with Medical Specialist Societies Brussels 1 March 2014.
NCB Noël Barengo, MD, PhD, MPH Department of Public Health University of Helsinki, Finland Unit of Clinical Research, University Hospital La Paz,
1 Brussels 16 January What is HOPE? HOPE is an excellent example of the diversity of European healthcare system What is HOPE? HOPE is an excellent.
M O N T E N E G R O Negotiating Team for the Accession of Montenegro to the European Union Working Group for Chapter 28 – Consumer and Health Protection.
1.05 Effective Healthcare Teams
Survey of acute hospital resources for patients with COPD T McCarthy, M O’Connor, on behalf of the National COPD (Respiratory) Strategy Group Population.
Title of the Change Project
Richard Murrugarra – Centurion
Update of the Scientific Secretariat
1.05 Effective Healthcare Teams
Lothian’s Clinical Quality Programme & Academy
Support- IRDiRC Proposed Work Plan And Communication Strategy
Yulia Mikhaylova Chair Expert Group on Primary Healthcare
NYHQ DSRIP Cultural Competency & Health Literacy Committee Kick-Off Meeting March 2015.
Greater Columbia ACH Board of Directors 4/19/17
National Diabetes Strategy Updates Dr. Al Anoud Mohammed Al-Thani
Preventing VTE in hospitalised patients
“2nd World Congress on Rare Diseases and Orphan Drugs”
HPH Strategy Seminar Beijing, China 7 september 2013 Andrea Limbourg
NATA Foundation Building Blocks Process
NATIONAL ASSOCIATION OF DIABETES CENTRES 2015
Improving Care for Older People in Acute Care
European Reference Networks Annika Nowak European Commission.
Are we ready for the next call of ERNs?
Improving Care for Older People in Acute Care
JARC General Assembly, Oct 16th, 2017
The International Consortium for Personalised Medicine
Recommendation: ASD Licensed Specialist
Data & Learning Team February 1, 2018.
Finance & Planning Committee of the San Francisco Health Commission
Health in Gateshead Your Local Engagement Board Meeting (LEB)
1.05 Effective Healthcare Teams
Our collective ambition -for the benefit of people with or at risk of lung disease: To be the respiratory leader within the lung health community that.
1.05 Effective Healthcare Teams
May 2019 The Strategic Programme for Primary Care
1.05 Effective Healthcare Teams
Josep M. Borras Milano, October 25, 2018
Perfect MatchSM Physician Locator
1.05 Effective Healthcare Teams
Presentation transcript:

ERN skin Coordinator: Prof. Christine Bodemer (APHP - Necker Enfants Malades Hospital – Department of Dermatology - MAGEC) with the support of Fondation René Touraine – Genodermatoses & Rare Skin Disorders Network.

it is a 56 centres of expertise in the field of rare and complex skin diseases from 18 countries gathered in one network to bring highly-specialised, high-quality and accessible healthcare closer to the patients.

ERN skin Official endorsement of: European Academy of Dermatology and Venereology (EADV) European Society of Paediatric Dermatology (ESPD) European Dermatology Forum (EDF).

Rare and Undiagnosed Skin Diseases : ERN skin Rare and Undiagnosed Skin Diseases : about 600 heterogeneous and complex conditions that can be interconnected and share common management in the care and the field of research stepwise approach

Deep phenotyping can be defined as the precise and comprehensive analysis of phenotypic abnormalities in which the individual components of the phenotype are observed and described

ERN skin ERN collaborative platform: to help the members of each ERN to work together (forum for each group, agenda, news from the ERN, etc.) CPMS (Clinical Patient Management System): discussion of complex patient cases referred to the ERN

ERN-SKIN goals MARCH 2018: Conference calls of each sub-thematic and transversal group - Sub-thematic group: update guidelines at 5 years detailed list of avalaible guidelines working groups with overlapping ERNs - Transversal group: ERN-Skin training 5 year programme Strategy for developing practical training in each country Development of an e-learning section Outcome: Development of a patient satisfaction survey with e-PAG Deep Phenotyping: SPOT app development Registry: ERN-Skin registry strategy

ERN-SKIN goals APRIL 23 : Executive Committee Meeting (chairs of the sub-thematic and transversal groups, Paris) JUNE 15: By this date, each health care provider representative should have updated the list of services available in their hospital, based on a template provided by the ERN-Skin General Coordination team SEPTEMBER: Conference calls of each sub-thematic and transversal group

ERN-SKIN goals NOVEMBER 22: ERN-Skin Executive Committee Meeting (chairs of the sub-thematic & transversal group, Rome) NOVEMBER 23: ERN-Skin Board Meeting and sub-thematic groups (every health care provider representative, Rome) NOVEMBER 24: ERN-Skin training, Rome