Cooperation agreement between VHIR and BCN-PID Foundation 7th January 2016
On 7th January 2016 Prof. Joan Comella, director of the Vall d'Hebron Research Institute, and Mrs. Carlota Villar, Vice President of the BCN PID Foundation, signed a collaboration agreement between both entities to promote research in pediatric primary immunodeficiencies. This agreement will allow the BCN PID Foundation and the VHIR to work hand in hand in the search of new advances in diagnosis and improvements in the treatment of children suffering from PID.
Comprehensive care for patients with PID
We have as one of our goals to provide comprehensive care attention for patients with PID. With the help of "La Caixa" we offer transportation, food and educational grants for PID patients and their relatives according to their needs and socioeconomic status. In the same line, a few months ago, the Pediatric Infectious Diseases and Immunodeficiencies at Hospital Universitari Vall d’Hebron expanded its comprehensive health care attention by incorporating a psychologist to offer a high-quality psychosocial support to children with PID who are treated in their unit.This project is carried out with the support of the BCN PID Foundation together with ACADIP and with the help of Obra Social La Caixa.
The BCN PID Foundation offers travel grants to attend ESID 2016
ESID in collaboration with our Foundation, the Barcelona PID Foundation, is offering 13 travel grants for junior members who wish to attend the Biennial Meeting of the ESID 2016 that will take place in Barcelona, Spain from 21st to 24th September 2016. Each travel grant will not exceed 1’000€ and is aimed to help covering awardees travel expenses and registration fees.
This year our WPIW campaign is entitled “All together to turn newborn screening of bubble babies into a reality in Catalonia” to try and show that newborn screening of the most severe group of PID is a need to ensure a lower mortality and morbidity of patients born with severe combined immunodeficiency (SCID). That is why we are currently struggling for the inclusion of TREC testing among the universal newborn screening in Catalonia.
Our program includes educational and scientific activities, such our co-sponsorship of the 6th edition of the training course on PID for residents and social and awareness activities such as the global balloon launch organized by the JMF, the launch of a video clip to raise awareness on PID or the organization of a charity dinner.
NEW WEBSITE OF THE BCN PID FOUNDATION COMING SOON! Thanks to the WIN Grant announced by the Jeffrey Modell Foundation we are renewing our website which will also be available in English. In a few weeks this new website will enable our followers to keep updated of our activities, have access to the newsletters or make donations to help us fight against PID.
LEARNING WHAT ARE PID The group CREA of the school Jesuïtes Sant Gervasi-Infant Jesús have picked as a project the PID and our foundation this year. For this reason they visited the Pediatric Infectious Diseases and Immunodeficiencies at Hospital Universitari Vall d’Hebron to learn more about PID and be able to prepare educational material in school to help us raise awareness in PID. This group of children will be the stars of this next World PI Week 2016. We will keep you updated of the excellent work they are carrying out.
AND YOU, DO YOU VACCINATE? On February 8th the program “30 minuts” of TV3, our National TV chanel, emitted a magnificent program on vaccines. Dr. Pere Soler, head of the UPIIP, remarked that "vaccination is not a personal but a public health decision and we must all join to protect the entire population."
VIDEO CLIP FOR PID To raise awareness of PID we are preparing a video clip of the song “Colored bubbles“ composed for us by the Catalan music group Boxets. The video, which is planned to be launched for the WPIW 2016 will include the participation of renowned people who join to give support to children suffering from PID.
This winter we have added new friends of the BCN-PID. We highlight the musician and composer Manu Guix, journalists as Mònica Terribas or Albert Om, the film critic Àlex Gorina or the actor Àngel Llàcer.
We continue adding missing pieces in the struggle for PID!
SMS CAMPAIGN FOR PID Vall d'Hebron Research Institute
A new SMS campaign has been released from the VHIR to get funds to benefit PID research. From our Foundation, we encourage you to collaborate in this initiative. Send a SMS with the word “DIDAC” to 28014.
Now you also can do research!
HELP CHILDREN LIKE JANA Teaming Group
A crowdfunding campaign by "Teaming Group”. For only 1€/month you can help and support PID research at Vall d’Hebron Research Institute (VHIR).
It’s almost priceless to make a research contribution…
On 12th March the ACADIP held its 7th General Assembly in Sant Hilari de Sacalm with the delivery of the ACADIP awards to those entities that collaborate with the association.
AEDIP / IPOPI
On March 23rdAEDIP and IPOPI participated in the IPPC (International Plasma Protein Congress) organized by the PPTA (Plasma Protein Therapeutics Association) giving voice to the needs and vision of Spanish patients with PID.
The Care-for-Rare Foundation at the Dr. von Hauner Children’s Hospital of the Ludwig-Maximilians-University Munich launches the Care-for-Rare Science Award 2016 endowed with 50.000 €. This award should give young scientists the chance to initiate a basic or clinical research project in the field of rare diseases. + Info
On May 7th will be held in Barcelona the first 22q11 Day focused on cognitive and social development aimed at healthcare and educational professionals that work with children diagnosed with 22q11 deletion. + info
TRAINING AND RESEARCH
VHIR SEMINAR - Prof. Bobby Gaspar 26th April 2016 - Barcelona, Spain
On April 26th on the HUVH will take place a lecture on PID as an activity of the research group “Grup de Recerca Infecció en el Nen Immunodeprimit” of the VHIR.
Prof. Bobby Gaspar, Professor of paediatrics and immunology at the UCL Institute of Child Health and honorary consultant in paediatric immunology at Great Ormond Street Hospital for Children in London, will talk about SCID: from 100% mortality to 100% survival in 50yrs?
6th Edition Training course on PID for residents physicians 18th - 27th April 2016 - Barcelona, Spain
The BCN PID Foundation is one of the co-sponsors of the 6th edition of the training course on PID for resident physicians that this year will take place from the 18th to 27th April at the ACMCB in Barcelona. The course is coordinated by the PID group of the Catalan Societies of Pediatrics and Immunology (SCP and SCI).
The purpose of this course is to train health professionals to ensure an early diagnosis and better treatment of patients with PID. In this way, the foundation accomplishes one of its foundational objectives by promoting training of health professionals in the field of PID.