El coordinador del grupo de Inmunodeficiencias es José Carlos Rodríguez Gallego (Servicio de Inmunología, Hospital Universitario Son Espases, Palma de Mallorca).
El resto de la junta directiva del grupo de Inmunodeficiencias es:
Miguel Fernández-Arquero (Servicio de Inmunología, Hospital Clínico San Carlos, Madrid).
Rebeca Pérez de Diego (Servicio de Inmunología, Universidad Complutense, Madrid).
Juantxo Aróstegui (Servicio de Inmunología, Hospital Clínic, Barcelona).
Ignacio González (Servicio de Pediatría, Hospital 12 de Octubre, Madrid).
Peter Olbrich (Servicio de Pediatría, Hospital Virgen del Rocío, Sevilla).
Javier de Gracia (Servicio de Neumología, Hospital Vall d'Hebron, Barcelona).
IPOPI (International Patient Organisation for Primary Immunodeficiencies) 11-02-2019 https://ipic2019.com/
Early bird registration is now open for IPIC2019! Register today to benefit from the best rates IPOPI has to offer.
The 4th IPIC congress will be held in the lively city of Madrid on 6-8 November 2019 and IPOPI is looking forward to welcoming you there!
The congress language is English but simultaneous translation to Spanish will be available.
Don’t miss out on your chance to benefit from this unique conference focused on diagnosis and clinical care of primary immunodeficiencies (PIDs).
ESID (European Society for Immunodeficiencies). 04-01-2019 https://mailchi.mp/kenes.com/newsesid-spring-edition-april-2654225?e=75f6add614
Please find a link to the newsletter ESID - Winter Edition - December 2018.
Topics:
-Message from the President.
-Secretariat Updates.
-News and updates from ESID Working Parties.
Junta de la SEI 13-09-2018 http://ipic2019.com
IPIC congresses are organised every two years and attract physicians with an interest in PIDs, such as immunologists, paediatricians, general practitioners, among others. The uniqueness of IPIC comes from its clinically orientated programme prepared with the input from the key PID stakeholders. IPIC2019 will take place in Madrid, Spain (November 6-9) with SEI as supporting organisation.
RITA 04-09-2018 http://rita.ern-net.eu
RITA’S mission:
-To provide state of the art comprehensive clinical care for children and adults with rare Immunodeficiency, Auto-inflammatory and Auto-Immune disorders.
-To ensure every patient across Europe has equal access to excellent expertise and care.
-To establish sustainable alliances with European centres.
-To improve diagnosis and therapy for patients with rare immunodeficiency, auto-inflammatory and auto-immune disorders.
-To train future leaders in the field, securing sustainability in an international perspective.
-Provide a platform for research.
Junta de la SEI 01-09-2018 https://mailchi.mp/0e09768806bc/c0benqx74r-1579165?e=57cd161f06
La "Barcelona PID Foundation" presenta la nueva edición de su newsletter, donde informan sobre sus más recientes actividades y novedades. Destaca la creación del "Consejo Asesor de Pacientes" de la Barcelona PID Foundation, un nuevo órgano asesor representativo de pacientes con IDPs y de sus familiares que permitirá dar voz directa a los pacientes y dar consejo a los proyectos que lleva a cabo la BCN PID Foundation.
Junta de la SEI 19-06-2018 https://mailchi.mp/3c53bb6fafa0/c0benqx74r-1566741
La "Barcelona PID Foundation" presenta su nueva edición de su newsletter, donde informan sobre sus más recientes actividades y novedades. Destaca la noticia del primer caso de "niño burbuja" detectado en Catalunya gracias al cribado neonatal de los TRECs, las infografias de IDPs creadas a raíz de la semana mundial de las IDPs y el proyecto PIDCAP (detección de IDPs en centros de atención primaria).
ESID (European Society for Immunodeficiencies). 17-05-2018 https://esid.kenes.com/2018#.WvQ4_xRQce4
We are delighted to invite you to the 18th biennial ESID meeting to be held from 24-27 October, 2018, in Lisbon, Portugal. This meeting will be focusing on 'PID – From Fetus to Elderly'. It is being organized for you by the local and international scientific committee.
The ESID 2018 meeting in Lisbon will encompass the very latest exciting perspectives bridging basic and clinical research across primary immunodeficiency and related infection, autoimmunity and inflammation.
The extended deadline for abstracts submission is May 22, 2018.
ESID (European Society for Immunodeficiencies). 10-05-2018 https://esid.kenes.com/2018#.WvQ4_xRQce4
We are delighted to invite you to the 18th biennial ESID meeting to be held from 24-27 October, 2018, in Lisbon, Portugal. This meeting will be focusing on 'PID – From Fetus to Elderly'. It is being organized for you by the local and international scientific committee.
The ESID 2018 meeting in Lisbon will encompass the very latest exciting perspectives bridging basic and clinical research across primary immunodeficiency and related infection, autoimmunity and inflammation.
The deadline for abstracts submission is May 15, 2018.
Junta de la SEI 16-04-2018 https://issuu.com/bcnpidfoundation/docs/annual_report_2017
We contact you again to send you our 2017 annual report with a compilation of all the work done in the field of research, training and social this past year that outline our founding goals.
The Foundation is consolidated as a fundamental axis on which revolve most of the improvements that are being made in Catalonia. One of the facts that stands out in this year’s annual report is to have really put the patient and his family at the center of all the projects undertaken, reaching schools and adding group activities that have been very well valued by participants and professionals.
We want to share with you the results of the work done together since without your involvement throughout this year all these wonderful results would not have been possible. To this we want to add to the report our sincerest thanks on behalf of all those who directly or indirectly suffer PID to all of you that have collaborated until now and to encourage you to continue doing so in the future.
ESID (European Society for Immunodeficiencies). 10-04-2018 https://mailchi.mp/84eb167cfdbd/newsesid-spring-edition-april-2018?e=75f6add614
Dear ESID Members,
We hope you enjoyed the Easter weekend and are ready to welcome the spring in its full bloom! The board is happy to share with you the latest news and interesting updates from ESID today and stay tuned for the upcoming news on the ESID Elections 2018.
See the Spring Newsletter in the attached link (above).
Your ESID Secretariat on behalf of the Board
IPOPI 20-03-2018 https://mailchi.mp/ipopi/ipopi-e-news-spring-2018?e=213bc260c3
In this issue:
-XV IPOPI Biennial meeting in Lisbon.
-New series of PID leaflets just published.
-WPIW2018 - My future starts with early testing and diagnosis.
-IPOPI publishes Position Statement on Access to Immunoglobulin Therapies.
-IPOPI attends Rare Diseases Day Events at EU Parliament.
-Discussing plasma supply developments.
-PLUS Consensus Meeting to discuss plasma supply.
-IPOPI at Workshop on Innovation in comparative Health Services & Systems Research.
-IPOPI attended EHC Round Table Discussion.
-Remembering Sara LeBien.
Hyper IgM Foundation 12-02-2018 https://mailchi.mp/1b71e391beee/ada-scid-and-your-clinical-practice-2654145?e=75f6add614
The Hyper IgM Foundation is proud to announce the availability of seed grant funding for researchers interested in the advancement of a cure for Hyper IgM Syndrome. The intent of these grants is to accelerate scientific work focused on improving the treatment, quality of life, and long-term outlook for patients with Hyper IgM. Special consideration will be given to well-defined projects focused on gene therapy/editing for CD40 Ligand Deficiency as well as hematopoietic stem cell transplantation for CD40 Ligand Deficiency.
During the 2018 calendar year, the Hyper IgM Foundation will be awarding one-time grants of up to $15,000 to worthy recipients. Grant applications for 2018 grants have a submission deadline of June 30th, 2018.
Mª Teresa Caballero Molina 12-02-2018
Se ha comunicado a la Agencia Española de Medicamentos y Productos Sanitarios (AEMPS) una distribución controlada de concentrado plasmático de C1 inhibidor, por lo que la Dra. Teresa Caballero, coordinadora del Grupo Español de estudio del Angioedema mediado por Bradicinina (GEAB) de la Sociedad Española de Alergología e Inmunología Clínica (SEAIC) nos hace llegar este informe (ver documento adjunto).
ESID (European Society for Immunodeficiencies). 08-01-2018
The European Society for Immunodeficiencies (ESID) would like to invite the membership to make suggestions concerning the location of the Biennial Meeting of ESID in 2022.
In accordance with ESID’s Constitution, the biennial meeting should be organised in collaboration with the partner socities – INGID (International Nursing Group for Immunodeficiency's) and IPOPI (International Patient Organisation for Primary Immunodeficiencies).
See attached PDF for full details.
Dra. Mónica Martínez-Gallo 07-12-2017
Desde el Hospital Universitari Vall d'Hebron (HUVH, Barcelona) se lanza esta propuesta de estudio colaborativo multicéntrico sobre el estudio del Síndrome hemofagocítico (HLH). La propuesta incluye recoger datos clínicos y de laboratorio de pacientes con HLH para tener una idea más precisa del espectro de presentación clínica y de las mutaciones más prevalentes en nuestra población.
Se adjunta PDF con toda la información sobre este estudio y como unirse a él.
Junta de la SEI 12-11-2017 https://issuu.com/seinmunologia/docs/casos_20clin_20inmunodeficiencias_2
El libro Casos Clínicos de Inmunodeficiencias (2016), presentado en el congreso de Alicante, ya está disponible en la cuenta que la SEI tiene en la plataforma ISSUU. De esta forma se puede visualizar de una forma fácil en cualquier momento. La plataforma ISSUU es donde la SEI tiene colgados todos los números de la revista Inmunología (en su versión actual) y otros textos de interés.
AEDIP (Asociación Española de Déficits Inmunitarios Primarios) 18-10-2017
AEDIP (Asociación Española de Déficits Inmunitarios Primarios) con el soporte de la IPOPI (International Patient Organisation for Primary Immunodeficiencies) organizan la mesa redonda "Implantando el cribado neonatal de la inmunodeficiencia combinada grave (IDCG) en España". Esta mesa redonda se celebrará el próximo 23 de octubre de 17 a 19 horas en el Congreso de los Diputados (Madrid).
Junta de la SEI 18-09-2017 http://mailchi.mp/976f36934d5c/fellowship-call-for-applications-rare-diseases-of-the-immune-system-from-pathophysiology-to-new-therapies-2653973?e=75f6add614
Short-term fellowship:
Scholarships of 1,500 Euros plus up to EUR 500 as travel support are available for current ESID Junior members (you must be under 35 but age will not be an absolute limit), who are physicians or scientists in training, interested in learning diagnostic/therapeutic procedures or lab techniques in the field of Primary Immunodeficiencies. Travel costs can be claimed after the fellowship from the secretariat. Each short-term programme should last between 1-2 months.
Medium-term fellowship:
Medium-term Fellowships will be awarded to current ESID junior members (you must be under 35 but age will not be an absolute limit), who is a physician or a scientist under specialist training, interested in pursuing a research project in the field of primary immunodeficiencies.
ESID (European Society for Immunodeficiencies). 03-09-2017 http://mailchi.mp/28b2b53471a3/fellowship-call-for-applications-rare-diseases-of-the-immune-system-from-pathophysiology-to-new-therapies-2653969?e=75f6add614
It is with great sadness that we inform you of the death of Dr. David Webster, Retired Consultant Immunologist, on the 17th August 2017.
David was a vital member of the immunology community. He was one of the first trainees in clinical immunology in the UK and was key to developing the specialty in the UK. He was also a founder member of EGID, the forerunner of ESID, and played an active part in ESID throughout his long and distinguished career. He made important contributions in the field of CVID across Europe, having set up the first clinic and research group to treat and investigate patients with CVID at Northwick Park Hospital in London which later moved to the Royal Free Hospital where he remained until he retired. He established an important legacy both in terms of clinical management of patients living with primary immunodeficiency and in the training and education of future generations of immunologists.
Junta de la SEI 23-07-2017 http://www.ada-scid.online
Adenosine Deaminase Severe Combined Immunodeficiency (ADA-SCID) is a rare, but dangerous disease whose patients have a malfunctioning immune system that leaves the body open to infection from bacteria and viruses. It is vital that healthcare professionals (HCPs) who are presented with ADA-SCID patients understand the biology of the disease, know how to screen for it, and are aware of the current and emerging treatments.
With "New Horizons in the Management of ADA-SCID", it is our goal to facilitate this understanding by providing direct access to the latest research and commentary in the form of independent editorials, published articles, webinars and case studies.
All aspects of the website are open to view, so please explore the portal, sign up for email alerts and please feel free to share it with your colleagues. You can contact us with questions and comments for the Editorial Board.
Junta de la SEI. 10-07-2017 https://issuu.com/seinmunologia/docs/inmunodeficiencias_casos_cl__nicos_
El libro Casos Clínicos de Inmunodeficiencias (2017), presentado en el congreso de Zaragoza, ya está disponible en la cuenta que la SEI tiene en la plataforma ISSUU. De esta forma se puede visualizar de una forma fácil en cualquier momento. La plataforma ISSUU es donde la SEI tiene colgados todos los números de la revista Inmunología (en su versión actual) y otros textos de interés.
Junta de la SEI. 25-05-2017 http://mailchi.mp/0154c7de7dc3/c0benqx74r-1272769?e=57cd161f06
La "Barcelona PID Foundation" presenta su nueva edición de su newsletter, donde informan sobre sus más recientes actividades y novedades. Destaca la celebración de los primeros 4 meses de implantación del cribado neonatal de las inmunodeficiencias combinadas graves y el reconocimiento del Hospital Universitari Vall d'Hebron (HUVH-VHIR) como uno de los 10 centros de la European Reference Networks for rare diseases (ERN).
Ver la newsletter completa en el enlace adjunto a la noticia.
Jose R Regueiro 01-03-2017 https://www.redaccionmedica.com/secciones/parlamentarios/c-s-quiere-generalizar-el-cribado-neonatal-de-ninos-burbuja--5925
El Grupo Parlamentario Ciudadanos, a través de su portavoz adjunto José Manuel Villegas, ha presentado una Proposición No de Ley sobre la ampliación de la cartera de servicios del SNS, incluyendo el cribado neonatal de las inmunodeficiencias severas, para su debate en la Comisión de Sanidad y Servicios Sociales.
Este cribado se ha puesto en marcha en Cataluña a principios de año y permite detectar, mediante la conocida como ‘prueba del talón’, enfermedades congénitas como las inmunodeficiencias combinadas severas –la enfermedad de los ‘niños burbuja’– que si no son detectadas en los primeros meses de vida tienen una mortalidad muy alta, hasta del cien por cien. No obstante, de ser detectadas a tiempo tienen altas probabilidades de curación a través de un trasplante de médula ósea o, en casos concretos, terapia génica.
José Carlos Rodríguez Gallego 08-02-2017
Se adjunta documento con los objetivos/acciones para el Grupo de Inmunodeficiencias de la SEI (GISEI) para el periodo 2016-2017.
ESID (European Society for Immunodeficiencies). 09-01-2017 http://us2.campaign-archive2.com/?u=9a2cc7583e61b3b736d504302&id=e38dbf3a48&e=a0ba5e478a
The ultimate goal is to collect as many participating centres as possible for the Unclassified Antibody Deficiency in the European Society for Immunodeficiencies (ESID) Registry (unPAD) study, using the information entered into the level 2 forms.
Fifteen centres are already participating, I hope you will participate too.
The unPAD study is a multi-centre observational cohort study based on ESID online Registry data. The primary objective of the unPAD study is to characterise ‘unPAD patients’ (as defined above), and to compare them with ‘CVID patients’. To this end, a set of research questions were formulated by the antibody deficiency expert panel of the ESID Registry Working Party, these were built as a level 2 form in the ESID Registry.
ESID (European Society for Immunodeficiencies). 30-12-2016 http://us2.campaign-archive1.com/?u=9a2cc7583e61b3b736d504302&id=01dcf0c27a&e=75f6add614
The ESID Registry defines selective IgM deficiency (sIgMdef) as a serum IgM level below 2 SDs of normal with normal levels of serum IgA, IgG and IgG subclasses, normal vaccine responses and absence of T-cell defects. It is a rare disorder about which we as yet know but little. Primary selective IgM deficiency is reported to be associated with a wide range of clinical presentations (but in many papers the ESID Registry definition is not met). As it is also found in asymptomatic individuals, its clinical significance remains uncertain.
In the Primary selective IgM deficiency: clinical and laboratory features (SIMcal) study we will analyze patients with ‘true’ primary sIgMdef registered in the ESID Online Database (mostly tertiary centres) and cases retrospectively collected from the laboratory files of a Dutch large teaching hospital (Jeroen Bosch Hospital, ‘s-Hertogenbosch) to gain more insight into the clinical and laboratory phenotype.
Jose R Regueiro 21-12-2016 https://photos.google.com/share/AF1QipPdr73nNu8VuqxujoorvmbjxCNIBU4hKxTn2MYuJco-6v58DLy7ilpO5xftHwR3Dw/photo/AF1QipPapFIbG0QhAyD45x2oFVu-dUZpnw5QnpbJ1brX?key=QWJzZ3ktREJhUDdxSEpQRFlrOFJfSXpFTW5nMlhR
En el enlace adjunto se puede ver la noticia sobre el estudio piloto realizado en el Hospital Virgen del Rocío (Sevilla) para el cribado neonatal de la Inmunodeficiencia Severa Combinada (SCID).
Especialistas en Pediatría de Hospital Universitario Virgen del Rocío han iniciado un estudio piloto para detecta inmunodeficiencias primarias (IDP) graves en recién nacidos incluyendo el test en la prueba del talón. Así, con la misma gota de sangre que se extrae de manera rutinaria en los primeros días de vida del bebé, pueden efectuar el diagnóstico precoz de estas enfermedades.
La detección temprana resulta fundamental para su tratamiento y su buen pronóstico, por lo que los profesionales del complejo sevillano llevan desde 2014 trabajando para valorar y ensayar posibles mejoras en estos procedimientos. Así, lideran el grupo español de especialistas que está definiendo las mejores opciones terapéuticas para estos pequeños pacientes en España, gracias a un proyecto de investigación financiado por el Instituto de Salud Carlos III.
Junta de la SEI. 03-12-2016 http://www.redaccionmedica.com/secciones/pacientes/aedip-inicia-contactos-para-lograr-el-cribado-neonatal-de-ninos-burbuja--8446
La Asociación Española de Déficits Inmunitarios Primarios (Aedip) se ha reunido con representantes de la Dirección General de Coordinación de Asistencia Sanitaria de la Consejería madrileña de Sanidad, con el objetivo de recabar apoyos para incluir en la cartera de servicios comunes del SNS el cribado neonatal de inmunodeficiencias combinadas graves (IDCG).
A esta enfermedad se le conoce comúnmente como la de los ‘niños burbuja’, se trata de una patología poco frecuente y letal si no se diagnostica y trata rápidamente al recién nacido. Tiene su origen en una alteración genética que produce linfocitos defectuosos en el sistema inmunológico.
El tratamiento es un trasplante de médula ósea en los primeros meses de vida, que consigue una probabilidad de supervivencia del 95 por ciento si se hace antes de los cuatro meses. El test que permite el cribado se comenzará a realizar en Cataluña a los recién nacidos a partir de enero de 2017.
Jose R Regueiro 15-11-2016 http://www.redaccionmedica.com/secciones/medicina/-el-nino-burbuja-se-puede-curar-si-se-detecta-a-tiempo--9526
La revista "Redacción Médica" entrevista a Carlos Jiménez, que preside la Asociación Española de Déficits Inmunitarios Primarios (Aedip), que agrupa a pacientes de más de 300 patologías relacionadas con los defectos del sistema inmunitario. Reivindica un mayor conocimiento de estas enfermedades, de sus causas, su diagnóstico y su tratamiento, porque detectadas a tiempo permiten una mejor calidad de vida de los pacientes y en algunas, como la inmunodeficiencia combinada severa, se pueden curar en un gran número de casos. Las estrategias encaminadas al diagnóstico temprano serían, por tanto, costo-eficientes.
Junta de la SEI. 05-11-2016 http://us10.campaign-archive2.com/?u=811c41dd5ff238900f210a5be&id=611262fc84
La "Barcelona PID Foundation" presenta su nueva edición de su newsletter, donde informan sobre sus más recientes actividades y novedades. Destaca la noticia de la implementación del cribado neonatal de las inmunodeficiencias primarias en Catalunya, a partir del 2017. También importante es el nombramiento del Hospital Vall d'Hebron como primer "Centro de excelencia de la Jeffrey Modell Foundation" del estado epañol.
Ver la newsletter completa en el enlace adjunto a la noticia.
Junta de la SEI. 13-11-2016 http://www.lavanguardia.com/vida/20160920/41449700707/la-jeffrey-modell-foundation-reconoce-vall-dhebron-como-centro-de-excelencia.html
El Vall d'Hebron Barcelona Campus Hospitalario es el primer centro sanitario de España que ha sido reconocido como centro de excelencia por la prestigiosa Jeffrey Modell Foundation (JMF). Esta fundación, con sede en Estados Unidos, tiene como objetivo promover el diagnóstico precoz y el tratamiento de las patologías infecciosas e inmunodeficiencias primarias. Hay 150 centros JMF en el mundo.
El doctor Pere Soler, médico adjunto de la Unidad de Patologías Infecciosas e Inmunologías Pediátricas (UPIIP) del Vall d'Hebron, ha calificado de "éxito ser el primer centro de excelencia Jeffrey Modell en España".
"Es un reconocimiento al trabajo realizado en nuestro centro durante muchos años y nos anima a seguir buscando la excelencia en la atención a nuestros pacientes con inmunodeficiencias pediátricas", ha apuntado Soler.
Dr. Christoph Klein 05-07-2016 http://www.klinikum.uni-muenchen.de/Else-Kroener-Fresenius-Research-School/de/index.html
The Hospital of the University of Munich, Germany, is one of the largest and most competitive university hospitals in Germany and Europe. 46 specialized hospitals, departments and institutions harbouring excellent research and education provide patient care at the highest medical level with approximately 10.000 employees.
The Dr. von Hauner Academy invites in the context of the Else Kröner Fresenius Clinical Research School with the title “Rare diseases of the immune system – from pathophysiology to new therapies” applications for a 6-12 months period fellowship position.
The program is open for residents in pediatrics or internal medicine and junior clinicians who wish to specialize in basic and translational science of rare diseases of the immune system.
Applicants must submit their CV, a cover letter and 2 letters of recommendation to Klinikum der Universität München, Prof. Dr. Dr. Christoph Klein.
Jeffrey Modell Foundation 27-06-2016 http://www.info4pi.org
275 Immunologists from Jeffrey Modell Diagnostic and Research Centers in 52 countries were brought together by the Jeffrey Modell Foundation for a four day Global Summit in Los Angeles, California, U.S.A. The physician experts, including two Nobel Laureates, represented the world’s leadership and are authorities in the diagnosis, treatment and management of Primary Immunodeficiencies. At the conclusion of the Summit, the physicians agreed to the guiding principles in the attached PDF.
In September 2015 we published that heterozygous mutation in NFKB1 can cause an antibody deficiency (CVID): "Haploinsufficiency of the NFKB1 Subunit p50 in Common Variable Immunodeficiency. Am J Hum Genet. 2015 Sep 3;97(3):389-403".
Since, it became clear that mutations in NFKB 1 and NFKB2 actually account for the majority of mutations in CVID: Using next generation sequencing, we identified 33 mutations in NFKB1 and NFKB2 in a cohort of 320 CVID patients.
Therefore, we now think it is time to publish a large case series on patients with mutations in NFKB1 and 2. To this end, I suggest to collect all the information of patients with mutations in NFKB1 and NFKB2.
(Find all the contact details in the attached PDF)
Jeffrey Modell Foundation 29-05-2016 http://info4pi.org/village/world-pi-week/this-years-global-movement
Como cada año, la Jeffrey Modell Foundation impulsó un movimento global en favor de la investigación de las inmunodeficiencias primarias concidiendo con la semana mundial de estas enfermedades (22-29 abril 2016). El acto principal consistía en una suelta de globos simultánea por todo el mundo. Varios centros españoles participaron y ahora la JMF ha editado un resumen de todo ello.
Se adjunta un PDF con un resumen de las actividades.
Toda la información detallada en la web de la JMF.
Junta de la SEI 12-04-2016 http://esid.kenes.com/scientific-information/call-for-abstracts#.VwzoC6tQce4
Este año el Congreso Bianual de la ESID (European Society for Immunodeficiencies) se celebra en Barcelona del 21 al 24 de Septiembre. El próximo 26 de abril es la fecha límite para enviar comunicaciones a dicho congreso. Este es un congreso de gran relevancia en el ámbito de las Inmunodeficiencias Primarias y tenemos la suerte de que esta edición se celebre en Barcelona.
Barcelona PID Foundation 07-04-2016 http://us10.campaign-archive2.com/?u=811c41dd5ff238900f210a5be&id=d8d665fc00
La "Barcelona PID Foundation" presenta su nueva edición de su newsletter, donde informan sobre sus más recientes actividades entre las que destacan un convenio de colaboración con el instituto de investigación del Hospital Vall d'Hebron, becas propias para asistir a la ESID 2016 (Barcelona) y actividades para la próxima semana mundial de las inmunodeficiencias primarias.
AEDIP (Asociación Española de Déficits Inmunitarios Primarios) 01-04-2016
Adjuntamos la presentación que la AEDIP (Asociación Española de Déficits Inmunitarios Primarios) realizó en el Congreso IPPC (International Plasma Protein Congress) el pasado 22 de marzo de 2016.
La presentación resume la visión que los pacientes con IDPs de diferentes aspectos relacionados directa o indirectamente con el diagnóstico, tratamiento e investigación en IDPs en nuestro país.
Barcelona PID Foundaion 20-03-2016 https://issuu.com/bcnpidfoundation/docs/annual_report_2015
La Fundación Barcelona para las Inmunodeficiencias Primarias a Pediatria (Barcelona PID Foundation) presenta la memoria anual 2015 que recoge todo su trabajo en los ámbitos de investigación, formación y difusión. En solo un año y medio de vida, la Fundación se ha convertido en una referencia en el campo de las inmunodeficiencias primarias en Catalunya y ha iniciado su internacionalización.
Adjuntamos el enlace a la memoria en la plataforma ISSUU.
Prof Andrew Cant (ESID President). 22-02-2016 http://esid.org/News-Events/Call-for-bids-European-Reference-Network-ERN
Bids are being invited to set up and be part of “European Reference Networks” for enhancing the clinical care of rare diseases, by sharing knowledge and good practice equally across Europe.
Each Network will have to have at least 10 centres in a minimum of 8 member states.
It has been agreed that there will be 21 networks of which “Immune Disorders, Autoimmunity and Autoinflammation” will be one. Within our theme there will be 3 sub-themes:
1. Auto inflammation - Marco Gattorna (Italy).
2. Auto immunity - Mark Little (Ireland) and Nico Wulffraat (The Netherlands).
3. Immunodeficiencies - Christoph Klein (Germany).
See website for full details.
Deadline for initial applications: 26th February 2016.
Jeffrey Modell Foundation 14-01-2016 http://www.info4pi.org
Esta suelta de globos ya tuvo un gran éxito el año pasado, con 110 grupos que participaron por todo el mundo. En 2016 la JMF quiere repetir y ampliar esta iniciativa coincidiendo con la "Semana Mundial de las Inmunodeficiencias Primarias" (22-29 de abril). Los grupos interesados deben ponerse en contacto lo más pronto posible con la JMF, que les enviará una caja de globos para dicho evento.
Markus Seidel 15-12-2015 http://us2.campaign-archive1.com/?u=9a2cc7583e61b3b736d504302&id=734112145c&e=a0ba5e478a
At the latest IEWP working Party meeting in Seville, Markus Seidel from Graz proposed to collect data on the experience with HSCT for LRBA deficiency across Europe and neighboring countries on behalf of the IEWP and the ESID, and to compile them with US American data for a joint study.
Bodo Grimbacher, Stephan Ehl, and Troy Torgerson (on behalf of the CIBMTR) communicated their support for this project.
We would like to encourage everyone who has transplanted patients with LRBA deficiency to contact Markus for further cooperation.
International Patient Organisation for Primary Immunodeficiencies (IPOPI). 23-11-2015 http://www.ipopi.org/index.php
Dear Spanish Society of Immunology (SEI),
On behalf of IPOPI we are writing to express our deep appreciation for SEI‘s invaluable support to the Second International Primary Immunodeficiencies Congress (IPIC2015) which took place in Budapest on 5-6 November 2015.
The feedback received so far has been extremely positive. We are delighted to have witnessed a significant increase (over 70%) in participation since the first congress, with close to 700 participants and over 70 countries represented this year in Budapest.
(see full letter attched).
Barcelona PID Foundation 28-10-2015 http://us10.campaign-archive1.com/?u=811c41dd5ff238900f210a5be&id=9de4b1dd94&e=e7d14669db
"Barcelona PID Foundation" is new project from the Pediatric Infectious Diseases and Immunodeficiencies Unit and Immunology Service of the Vall d'Hebron Hospital (Barcelona) toghether with patients and families, that pretend to achieve excellence in research, teaching and clinical management of paediatric PID patients in Catalonia.
This newsletter is a summary of several acitivities of Barcelona PID Foundation, including the official reception of the President of the Catalan Parliament that allowed resuming negotiations for the initiation of newborn screening of SCID in Catalonia.
Junta de la SEI 08-10-2015 http://esid.kenes.com
Este congreso se celebrará del 21 al 24 de Septiembre de 2016 y tendrá como lema “Immunodeficiency - Forward Across the Frontiers”. Se tratarán temas de interés como los avances en el diagnóstico inmunológico, la genética y la inmunología de las enfermedades humanas, así como los avances en la práctica clínica y nuevos enfoques terapéuticos. Adjuntamos la carta de presentación.
Junta de la SEI 07-08-2015 http://esid.org/Working-Parties/Registry/Studies/APDS-Registry
This is an industry-supported registry on patients with activated PI3K delta syndrome (APDS).
The goal of the project is to:
-Describe the natural history of APDS.
-Develop a risk model for APDS patients (identification of markers predicting disease severity).
-Assess the impact of treatment strategies for APDS.
-Facilitate access for patients to studies with PI3K delta inhibitors
The APDS "level 3" registry project has been developed by Alison Condliffe, Sven Kracker and Stephan Ehl in close coordination with the ESID board and the ESID registry working party. The project is sponsored by 3 independent industry partners. ESID stays in full control of the registry data, but industry partners receive regular data exports to identify patients meeting inclusion criteria for their studies. They have the right to contact centers and ask them to offer their patients inclusion into a study protocol.
Dear colleagues,
We would like to make you aware of a nice small meeting in Frankfurt, Germany, on Autoimmunity and Immunology/Immunodeficiency on November 13th/14th, 2015.
The meeting will take place in a hotel right next to the central train station in Frankfurt, 20 min. away from the airport.
The meeting is organised by the German Society of Immunology and is addressed to clinicians and clinician scientists.
There are still a few open places. The registration fee is 75 EUR until July 31st and 100 EUR thereafter, but INCLUDES the one night stay AND food during the meeting.
The meeting language will be English.
Please find the programme attached.
Best regards,
Bodo Grimbacher and Bimba Hoyer
(Speakers of the Clinical Working Party of the German Society of Immunology,
and organisers of the meeting)
Bodo Grimbacher 24-07-2015 www.ctla4-deficiency.org
Dear all,
With this message, I would like to ask you for your collaboration regarding the establishment of a CTLA4 cohort.
We are currently in the process of identifying as many patients with CTLA4 deficiency as possible to get a better understanding of the clinical phenotype of those patients and to determine the best treatment options for them. To date, sirolimus and abatacept, as well as HSCT have been applied, but the outcome is variable.
So far our cohort consists of 38 CTLA4 mutation carriers, of which 27 are symptomatic, as well as 11 asymptomatic carriers. The latest age of onset was at age 49. Apart from the already published phenotype including hypogammaglobulinemia, enteropathy and lymphadenopathy we have observed lymphoma and HLH in several of our patients. This illustrates the importance of gathering more data on this enigmatic disease.
See details in the attached PDF.
Bodo Grimbacher
Jose R Regueiro 07-07-2015 https://www.youtube.com/watch?v=KOrmZi6rCys
Difundimos una campaña del Institut de Recerca de la Vall d'Hebron (VHIR) para dar a conocer y recaudar fondos para destinar a la investigación de las Inmunodeficiencias Primarias (IDPs). Se trata de una campaña de SMS a 1,20€, donación que se destina íntegramente al estudio de estas enfermedades en el VHIR. Adjuntamos un cartel para la difusión de esta campaña y el enlace a un video.
Jose R Regueiro 21-04-2015 http://www.info4pi.org
Del 22 al 29 de abril se celebra la Semana Mundial de las Inmunodeficiencias Primarias (IDPs). Des de la Jeffrey Modell Foundation se organiza cada año una suelta de globos simultánea en más de 50 países. En españa las principales asociaciones de pacientes con IDPs conjuntamente con los principales hospitales han organizado sueltas de globos para el miércoles 22 de abril.
Jose R Regueiro 16-04-2015 http://www.acadip.org/ca.html
Para esta próxima Semana Mundial de las IDP 2015, ACADIP (Associació catalana de dèficits immunitaris primaris) con la colaboración de Alex Crivillé ha preparado una campaña publicitaria basada en la importancia de la investigación en el ámbito de las IDP bajo el lema de "Démosle gas a la investigación".
Se harán varias actividades en el ámbito científico, de difusión y social.
Adjuntamos programa de actividades en PDF.
Jose R Regueiro 17-03-2015 http://www.asid.ma
Dear Colleagues and Friends,
The ASID Board is happy to inform you that the pre-program and registration requirements in the 4th congress of the African Society for Immunodeficiencies, scheduled in Algiers, Algeria on 29-31 May 2015, are available on www.asid.ma.
Please note the deadline for proposing your work and specify your choice of oral or poster presentation.
ASID office will be particularly pleased to see many of you in this main scientific PID event of Africa
Best Regards.
A Prof Aziz Bousfiha, Secretary General of ASID
Prof Rachida Boukari, President of ASID.
Jose R Regueiro 05-03-2015 http://www.ipic2015.com
The IPIC 2015 Scientific Committee invites you to submit an abstract for poster presentation. In this second edition of the congress, the presenters of the 3 best posters will each get a 5 minute timeslot in the Congress Oral Presentation session on Friday 6 November 2015. The winners of the 3 best posters will also be awarded the following awards: 1000€ (1st place), 750€ (2nd place) or 500€ (3rd place).
Jose R Regueiro 06-02-2015 http://www.abadip.com/i-jornada-formativa/
Adjuntamos el tríptico informativo sobre la 1ª Jornada Formativa en Inmunodeficiencias Primarias que tendrá lugar el 13 de marzo de 2015 en el Hospital Universitario Son Espases (Palma de Mallorca).
Adjuntamos una documento sobre el estado de las Inmunodeficiencias en España presentado por Jose R. Regueiro en el "Jeffrey Modell Centers Summit" que tuvo lugar en Berlín, en Julio del 2013.
Jose Ramón Regueiro 03-06-2014 https://redip.org.es/redip/
El Registro Español de Inmunodeficiencias Primarias (REDIP) nació en el año 1993 con el fin de recoger la incidencia de estos síndromes en el Estado Español. Cada dos años el REDIP organiza reuniones científicas monográficas sobre las Inmunodeficiencias Primarias en Palma de Mallorca, Madrid, Barcelona y Sevilla. El Registro Español colabora con el Registro Europeo de Inmunodeficiencias (ESID).
Jeffrey Modell Foundation 28-04-2014 http://www.info4pi.org/
Primary Immunodeficiency (PI) causes children and adults to have infections that come back frequently or are unusually hard to cure. 1:500 persons are affected by one of the known Primary Immunodeficiencies. If you or someone you know is affected by two or more of the following Warning Signs (see attached PDF), speak to a physician about the possible presence of an underlying PID.
Jose Ramón Regueiro 02-04-2014 http://www.ncbi.nlm.nih.gov/pubmed/24668296
In 2011, the Jeffrey Modell Foundation published data that was collated from our Center Directors from around the world. We are pleased to share with you today, our new manuscript, that has just been published by Springer Science and Business Media, with updated data: “Global overview of primary immunodeficiencies: a report from Jeffrey Modell Centers worldwide focused on diagnosis, treatment, and discovery”.
This is the most comprehensive and wide ranging report to date of patients with Primary Immunodeficiencies throughout the world.
We encourage you to access the document directly at Springer Link, and we hope you will find the entire article informative.
We are hopeful that this report will help enlighten government officials about the necessity of supporting programs of awareness and education, and that more patients will be properly identified, referred, diagnosed, and treated.
Jose Ramón Regueiro 26-03-2014 http://www.ipopi.org/
IPOPI, the International Patient Organisation for Primary Immunodeficiencies, is the Association of national patient organisations dedicated to improving awareness, access to early diagnosis and optimal treatments for primary immunodeficiency (PID) patients worldwide
Established in 1992, IPOPI works as the global advocate for the PID patient community in cooperation with its National Member Organisations (NMOs) and key PID stakeholders.
Jeffrey Modell Foundation 24-03-2014 http://www.ncbi.nlm.nih.gov/pubmed/24599744
Dear colleagues
We are pleased to present you this important manuscript just published by Springer Science and Business Media.
This is the first economic analysis citing actual results reported by several large population states conducting newborn screening for SCID using the TRECS Assay. Annually in the United States, there are now more than two million newborns being screened for SCID and related T- cell lymphopenias in 19 States. Since Jeffrey Modell Foundation started this Program three years ago, more than seven million babies have been screened.
We would like to bring to your attention Appendix 2: “JMF Economic Analysis”, which is a brief summary of the “decision tool” that can be quickly reviewed by Public Health Departments and Health Ministries in states, countries, regions and localities throughout the world.
Warmest regards,
Vicki and Fred Modell
Co-Founders
Jeffrey Modell Foundation
Asociación Española de Déficits Inmunitarios Primarios 03-03-2014 http://www.aedip.com/
Dentro de la IV Semana Internacional de las Inmunodeficiencias Primarias, la Asociación Española de Déficits Inmunitarios Primarios (AEDIP) organiza esta jornada, que tendrá lugar en Sevilla el viernes 25 de Abril de 2014.
Jose Ramón Regueiro 01-03-2014 http://www.rtve.es/television/20140220/tve-presenta-telemaraton-investigacion-enfermedades-raras/882483.shtml
TVE celebra un ‘Telemaratón por la investigación de las enfermedades raras’. Un especial que se emitirá en La 1 y el Canal Internacional el próximo domingo 2 de marzo a partir de las 17:30 h.
El Telemaratón incluirá actuaciones musicales, reportajes, entrevistas y conexiones en directo y contará con la participación de rostros conocidos del ámbito de la cultura, el deporte, el arte y la televisión.
La gala solidaria es el colofón del movimiento ‘Todos somos raros, todos somos únicos’ y recaudará fondos para la investigación biomédica de estas enfermedades, que afectan a más de tres millones de personas en España.
Jaime Cantizano, Mariló Montero, María Casado, Alfredo Menéndez, Pilar García Muñiz y Fernando Albizu presentarán este evento junto a Isabel Gemio.
World PI Week 23-01-2014 http://www.worldpiweek.org/
La Semana Mundial de las Inmunodeficiencias Primarias es una campaña global que tiene como objetivo dar a conocer y mejorar el diagnóstico y el tratamiento de las inmunodeficiencias primarias.
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