ESID Policy Plan

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ESID Policy Plan

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Policy plan


prepared by the ESID Administrative Office

October 2016

1. About ESID

1.1 General Description

The European Society for Immunodeficiencies (ESID) is a non for profit association that was created in 1994. ESID has been striving to improve the knowledge in the field of Primary Immunodeficiency (PID) by encouraging research, developing educational programs and fostering cooperation among all those involved in the diagnosis, treatment and management of these diseases.

ESID is organized in 7 working parties – Inborn Errors, Clinical, Education, Genetics, Registry, ESID Juniors, PID Care in Development. In order to perform its mission ESID organizes several activities such as

  • ESID Biennial Congress
  • ESID Focused Meetings
  • ESID Online Education
  • ESID Summer School
  • Endorsed activities
  • Awards and Grants
  • ESID Registry
  • ESID Guidelines

1.2 Mission

ESID believes that every child, adolescent and adult born with a defective immune system has the right to benefit from both clinical and scientific knowledge.

Therefore, our mission is to enable patients with primary immunodeficiency diseases to live their lives to its full potential by improving awareness, diagnosis, treatment, education and understanding of these diseases.

As the leading society in the field, ESID is committed to promote collaboration between healthcare professionals, patient organizations, industry and governmental bodies and to foster education and research.

The ESID motto and theme is: “Together we can change the lives of those affected by PID”

1.3 Current Board Members






Prof Andrew Cant

Great North Children's Hospital


President Elect

Prof Isabelle Meyts

Pediatric Immunology at the Children’s Hospital of the University of Leuven



Dr Mirjam van der Burg

Erasmus MC

The Netherlands


Dr Fabio Candotti

Centre hospitalier universitaire vaudois



Dr Eleonora Gambineri

University of Florence, Department of Sciences for Woman and Child's Health



Dr Nizar Mahlaoui

CEREDIH:Centre de Référence Déficits Immunitaires Héréditaires



Dr Andrew Gennery

University of Newcastle upon Tyne


PIC Care in Development

Dr Peter Jandus

Hôpitaux Universitaires de Genève



Dr Kaan Boztug

Research Center for Molecular Medicine of the Austrian Academy of Sciences



Dr Peter Olbrich

Hospitales Universitarios Virgen Macarena y Virgen del Rocio


2016 Congress President

Dr Oscar de la Calle

Hospital de Sant Pau


2018 Congress President

João Neves

Hospital Dona Estefania, Pediatric University Hospital


2. Activities

In order to meet its goal ESID organizes various activities and events throughout the year.

2.1 Biennial Meeting

ESID organizes biennial congresses. The goal of the ESID Biennial Congress is to bring together leading clinicians and scientists to share recent momentous scientific advances in the field of primary immunodeficiencies and related diseases. This biennial conference also gathers the patient organization (IPOPI) and the nurse organization (INGID), allowing to assemble a global audience and offers a unique opportunity to interact at different interfaces. The aim of ESID is to bring the latest science in this rapidly moving field to the clinicians in a way no other meeting can. ESID’s biennial meetings are the world’s largest and most important meeting devoted to Primary Immunodeficiencies with over 3000 attendees.

2.2  Focused Meetings

The ESID Board has decided to organize a more focused meeting in the biennial meeting off-years to enable clinicians to keep up to date with the rapidly evolving world of primary immunodeficiencies. These meetings will be more focused on all aspects of a specific defined area and more interactive between clinicians and scientists.

For 2017, the focus of the meeting will be immune dysregulation as manifest in primary immunodeficiencies, auto-inflammation and auto-immunity; pathophysiology, diagnosis and treatment. We actively want to involve colleagues in auto-immunity and auto-inflammation so as to ensure that this is a cutting edge meeting, bringing together the latest research and understanding in these converging fields. To facilitate this, we would like to move away from too many parallel sessions in this meeting, but will also have lively interactive Educational sessions, further developed in line with suggestions from our members.

2.3 Working Parties

2.3.1 Education

The Educational Working Party of ESID is formed by the Chairperson and other Faculty members of the ESID biennial Summer School. Its goal is to offer educational opportunities regarding Primary Immunodeficiencies to young people starting in the field to enthuse, inform and encourage the next generation of leaders in PID practice and research throughout Europe.

ESID Summer School

The educational flagship event of ESID comprises of 5 daysof interactive talks and workshops led by leaders in the fieldintertwined with social interaction in a pleasant setting.  The applicants are selected on the basis of theirachievements in the field.

Biennial Meeting Educational Day

The ESID Educational Day is organized as part of the biennial ESID meeting. This day is meant for interaction, networking and education for ESID junior members and other junior attendants of the biennial ESID meeting. Plenary and poster sessions, and breakfast or ‘sunrise’ sessions form part of the varied program.

Travel grants

The Educational Working Party awards travel grants to the Biennial ESID meeting and to the ESID Summer School and other affiliated meetings.

Grants and Fellowships

The Educational Working Party awards fellowships to ESID junior members, consisting of short-term fellowship, medium term fellowship and long-term fellowships.

Other meetings

The Educational Working Party supports other meetings with travel grants for junior participants, such as the ESID Prague Spring meetings, and other - often one-time - meetings and workshops after these have been approved by the ESID Board.

 ESID Education Online

Education – empowerment of health professionals, anytime, anywhere.

ESID developed an online educational portal which acts as the repository for vital information about primary immunodeficiencies including case studies, webcasts and other educational material. This educational tool is exclusively accessible for ESID Members.

2.3.2 ESID Juniors

ESID Juniors WP is an interactive forum for young immunologists, clinicians, researchers and any ESID member who would like to participate. The mission of the forum is to promote the development of the next generation of clinicians and researchers with an interest in Primary Immunodeficiencies. The ESID Juniors WP achieves its goals through ESID meetings, networking opportunities, PIDs Summer Schools, educational resources and career advice.

In the map of European Centres ESID provides information on centres available for clinical or laboratory internship or fellowship. All ESID junior researchers and clinicians are invited to make their contribution to the Young Researcher Corner and actively take part in showcasing their latest research and topics.

ESID Talent Award

The intention of this award is to grant Juniors with ESID mid-term fellowships (2014-2015) the opportunity to share their experiences, projects and results with the ESID community. This award is envisaged to acknowledge those candidates with the most remarkable achievements as a direct result of their fellowship projects.

Examples for those achievements are (but not limited):

-       Presentations at scientific meetings

-       Publications

-       Prizes granted by scientific societies

-       Establishment of collaborations between different groups or centers

-       Clinical/research appointments in reference centers

-       On-going clinical or basic research projects with yet unpublished results

2.3.3 Genetics

The ESID Genetic Working Party wants to help to connect and support the collaborative clinical, genetic laboratories and research units associated with the ESID society. In order to facilitate access to information for genetic evaluation on primary immunodeficiencies (PIDs) to the clinicians and ESID members for their patients, the ESID working party has defined specific aims:

  • Identify the different laboratories in Europe and abroad which perform genetic and prenatal genetic diagnostic for PIDs.
  • Provide this information on the ESID Website to ESID members.
  • Develop consensus statements for genetic diagnosis of PIDs.
  • Establish links from the ESID website to various immunodeficiency websites and genetic laboratories about the already identified mutations in PID genes.
  • Link with the ESID Registry to improve documentation.
  • Finally, in the technological “advances” context in genomics with the development of the next-generation sequencing (NGS) for the PIDs’ diagnostic, the ESID Genetics WP has organized a “PID next-generation sequencing consortium” with following goals:
    • Efficiently implement and exchange experiences of genetic laboratories using NGS
    • Exchange mutation data, genotypes and phenotypes (for the interpretation of ‘new’ variants)
    • Develop European wide consensus guidelines for PID NGS data handling and patient information/informed consent forms
2.3.4 Clinical

The ESID Clinical Working Party aims to support the collaborative clinical research and education among the centres. In order to achieve this task following specific aims have been defined:

  • To create and update the definition of primary immunodeficiency disorders (PIDD)
  • To foster clinical surveys and trials for patients with PIDD
  • To develop consensus statements for diagnosis and therapy of PIDD
  • To support quality and comparability of diagnostic procedures for PIDD
  • To support exchange between centres for clinical education
2.3.5 Registry

The ESID Registry is the largest PID database worldwide. The ESID Registry has been recently re-designed to provide a major contribution to the following:

  • Epidemiological tool for the PID scientific and medical community to enhance research and for PID advocacy at the European and international level
  • Clinical and translational research (updated clinical criteria,)
  • Improvement of diagnostic and therapeutic strategies
  • Identification of novel disease-associated genes
  • Improvement of quality of life of patients and alleviate the burden of disease
  • Awareness and education of physicians and healthcare professionals
2.3.6 Inborn Errors

The ESID Inborn Errors Working Party works very closely with the EBMT Inborn Errors Working Party (IEWP). The aim of the working party is to improve the outcome of transplant and gene therapy for severe congenital immunodeficiencies through:

  • enhanced interaction between centres involved in the application of BMT to treat severe congenital immunodeficiencies
  • undertaking retrospective and prospective collaborative studies to look at the outcome of transplant for these conditions
  • education of individuals involved in the care of severe immunodeficiencies
  • development of guidelines for treatment of severe congenital immunodeficiencies
  • the development and use of a common registry (SCETIDE, to document and analyse results of treatment
2.3.7 PID Care in Development

The PID Care in Development Working Party aims at building up an E-learning platform in order to offer a global access to best knowledge and most recent science achievements for clinical application in the care of primary immunodeficiencies.

3. Global PID Alliance

The European Society for Immunodeficiencies (ESID) formed an alliance with four international societies focused on primary immunodeficiency representing the five major continents. Together they have formed the International Alliance for Primary Immunodeficiency Societies (IAPIDS).

The agreement made by the Asia-Pacific Society of Immunodeficiencies (APSID), African Society for Immunodeficiencies (ASID), European Society for Immunodeficiencies (ESID), the Latin American Society for Immunodeficiencies (LASID), as well as The Clinical Immunology Society (CIS) was signed and announced at the ESID Annual Meeting in Barcelona, Spain on September 21, 2016.

“The creation of the Alliance is an extraordinary accomplishment in global collaboration that only serves to further the mission of all of its members with the ultimate goal of promoting excellence in patient care,” said CIS President Jordan Orange, MD, PhD.

The IAPIDS exists to advance the member professional societies in education of those engaged in the care of PID patients and promote member societies in disseminating and advancing the basic, translational and clinical science of PID and related knowledge all in the name of advancing the well-being and care of patients affected by PID and related conditions.

4. Finances

4.1 How is our income generated?

The society derives it funding mainly from the following sources:

  • Membership
  • Congress profits
  • Sponsorship and gifts

4.2 Use of funds

ESID uses the received funds to the support the overall mission of the society. The main focus herewith is to invest into educating medical professionals and provide meeting and networking opportunities for such goal.

ESID funds can be used for the following purposes:

  1. Funding studies on co-operative European data of immunodeficiency diseases.
  2. Funding activities of the Working Parties, e.g. reasonable travel expenses to Working Party meetings taking place outside the Biennial Meeting.
  3. Funding the dissemination of information by the Secretary to members of ESID.
  4. Funding of other administrative costs considered necessary by the Board.
  5. Maintaining the ESID online Registry.
  6. Maintaining the ESID website.
  7. Organizing the biennial ESID Summer Schools, and biennial ESID Educational Days.
  8. Publication of the ESID Newsletter and Supplements.

 Our board members are not paid for their services and they are volunteers.

4.3 Reserves

The society would like to maintain a minimum reserve in order to support the running of the society and its activities in case of an unsuccessful biennial meeting or other financial losses by unforeseen global events and/or force majeure.

ESID Constitution