Working Group: Education
Co chairs: Carine Wouters, Alessandro Plebani
- Improve educational standards across Europe and foster dissemination of knowledge
- Provide strategic educational objectives and priorities
- Support and overlook development of educational activities of existing parent societies
- Provide platform for networking and coordinate communication between ETC of parent societies
- Harmonise and monitor educational and training activities of parent societies within Europe
- Advocate and provide support for communication with specialist societies on a European level (e.g. EAP, UEMS)
- Develop European platform for subspecialty education (RITA Academy)
Working Group: Clinical Guidelines / Recommendations
Co chairs: Stephen Jollis, Thierry Martin, Angelo Ravelli
To identify priority areas for guidelines within each specialty and ensure access to these guidelines for all
Working Group: Registries /Biobanks
Co chairs: Joris Monfrans, Miles Stanford
To provide a census of already running registries in Europe, potentially from local initiatives to international realities. To give us a precise picture of the number of registries, number of patients, conditions examined, type of information collected, to encourage rationalization and efficiency of already existing and future registries.
Working Group: Molecular Testing
Co chairs: Isabelle Touitou, Kaan Botzug
To obtain a standardized and uniform European-wide approach for the molecular diagnosis of monogenic immune–mediated disease ensuring accessibility for state of the art genetic diagnostics for all patients; evaluated by audit against quality standards.
Working Group: IT/e-Health
Co chairs: Nico Wulffraat, Mark Little, Farida Fortune
To effectively implement the shared IT platform and Clinical Patient Management System
Working Group: Stem Cell and Gene Therapy
Co chairs: Alessandro Aiuti, Bobby Gaspar
To make equal access to Stem Cell and Gene Therapy a reality across Europe for patients affected by rare disorders of the immune system including auto-immune and auto-inflammatory conditions. This goal shall be reached by bringing together ongoing activities and studies in this field, by harmonizing data collection and analysis and finally enabling prospective studies to improve the treatment options for these patients across Europe.
Working Group: Transition Care
Co chairs: Pere Soler-Palacín
- to scope the prevalence and practice of current transition programs in Europe
- to identify gaps in transition & the reasons for these
- to collect information about models that work
- to develop best practice guidelines
Working Group: Patient Organisations
Co chairs: Leire Solis
Contribute to the development of patient information, treatment policies, good practice guidelines and care pathways
Support the network with the dissemination of information and communication to the wider patient community
Contribute to the development of research priorities and ensure they are informed by the needs of patients and families
Advise on ethical issues on the application of personal data rules, compliance of information consent and management of complaints
Engage with the appropriate patient communities for disease specific activities and projects
Anything else needed to achieve RIPAGs goals and objectives.
Working Group: Communication
Co chairs: Richard West
To promote RITA activities and achievements among all stakeholders who has an interest in auto imme diseases, auto inflammatory diseases, primary immunodeficiency diseases.
Working Group: Pharmacovigilance / Biological Therapies
Co chairs: Stephan Ehl
- Establish a common task force for the screening, preventive vaccinations, correct use and monitoring of biologic treatments in immune mediated diseases
- Complete survey of current registers within the constituent themes
- Establish a common tool for pharmacovigilance in these rare conditions
- Complete gap analysis & agree on a common action plan for prospective surveillance on biologicals, biosimilars and targeted therapies such as small molecule-drugs
Working Group: Directorate: Research
Co chairs: Fabrizio de Benedetti, Martin van Hagen
RITA will provide a common platform to facilitate clinical trials using expanded patient registries, thus benefitting more patients with rare immune disorders. By bringing PID, autoinflammatory and autoimmune networks even closer together, RITA will display synergistic effects for future research activities.
RITA will offer a unique opportunity to greatly accelerate patient orientated research in areas such as
(i) Next-generation sequencing technologies
(ii) novel cell- and gene-based therapies
(iii) development of cytokine and antibody therapies
(iv) cutting edge technologies for assessing immunophenotyping RITA will also provide links and bridges between scientific organisations dedicated to investigate rare immune disorders.
Become a Member
The 3 subtypes (different criteria) Associated national centers, Collaborative national centers and Coordination hubs. Blocking period of 6 months between establishment of ERNs and first enrolment of affiliated partners. Integration of identified affiliated partners planned for end of 2017/beginning of 2018Become a member
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