Severe combined immunodeficiency
- Bubble boy disease
- SCID due to adenosine deaminase deficiency
- ADA deficiency
- Severe combined immunodeficiency due to adenosine deaminase deficiency
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ORDR Co-Sponsored Conferences
2016 Rare Disease Day at NIH, Monday, February 29, 2016
Location: Building 10, Masur Auditorium, National Institutes of Health, Bethesda, MD
Description: The 2016 Rare Disease Day at NIH will take place on February 29. The event, sponsored by NCATS and the NIH Clinical Center, aims to raise awareness about rare diseases, the patients they affect and the research collaborations that are addressing rare disease challenges. The day will feature tours, posters and exhibits, and presentations.
Primary Immune Deficiency Treatment Consortium Annual Scientific Meeting, Thursday, April 09, 2015
Location: Houston, TX
Description: The Specific Aim of this Workshop is to create a scientific forum for junior and senior investigators with a special interest in PID to focus on timely topics with respect to the immunobiology, diagnosis and therapeutic correction of PIDs leading to hypothesis-based prospective clinical trials that will optimize the care and durable correction of disease in children with PID.
Primary Immune Deficiency Treatment Consortium (PIDTC) Scientific Workshop, Thursday, May 01, 2014 - Saturday, May 03, 2014
Location: Seattle, WA
Description: The first three PIDTC Annual Scientific Workshops beginning in 2011 focused on critical topics for patients with SCID, Wiskott-Aldrich Syndrome (WAS) and Chronic Granulomatous Disease (CGD). Over 2012 and 2013, the Workshop has seen participation increase by more than 25% with a significant portion consisting of trainees and junior faculty interested in PID. We have also seen increasing participation from European colleagues resulting in the recent commitment to collaborate on PIDTC’s natural history study in CGD. Further discussion with European colleagues is underway to collaborate on PIDTC’s study of outcomes for patients with SCID who received HCT and have survived 25 years or more. Finally, the Workshops have facilitated the development of the first ever prospective multicenter intervention trial for newborns with SCID.
The Jak/Stat Pathway: 20 Years from Discovery to Drugs, Thursday, September 22, 2011 - Saturday, September 24, 2011
Location: NIH Natcher Center, Bethesda, MD
Description: As a scientific conference, the primary goal is the dissemination of recent data and developments in the field to intersted researchers in the field. The conference includes a scientific program and reception, which will help to foster collaboration and networking. Participants should achieve a better understanding of the state of the art research in this exciting and clinically relevant field.
Primary Immune Deficiency Treatment Consortium (PIDTC) Scientific Workshop, Thursday, April 07, 2011 - Saturday, April 09, 2011
Location: San Francisco, CA
Description: This was a 3-day meeting. Participation at the workshop was by invitation and included representatives from each of the centers participating at PIDTC as well as representatives of CIBMTR, USIDNET, NIAID, ORDR, EBMT, and ESID. This was meant to favor collaboration and promote international collaborative trials in the field of these rare disorders. Special attention was paid to invitation of young investigators at a senior stage in their training or at the beginning of their academic careers. The meeting was open to representatives of the patient advocacy groups that are active in the field of primary immune deficiencies (PIDs) with the intent of promoting communication and collaboration. The results of the meeting will be published in a peer-reviewed journal.
Primary Immunodeficiency Disease Consortium Conference, Thursday, June 11, 2009
Location: San Francisco, CA
Description: The CIS Primary Immune Deficiency Consortium Conference provided new investigators in this field the continued opportunity to enhance career development by learning from leaders in the field of primary immunodeficiency and other young investigators from institutions across the Americas and Europe.
Improving Cellular Therapy for Primary Immune Deficiency Diseases: Recognition, Diagnosis and Management, Thursday, May 21, 2009 - Friday, May 22, 2009
Location: EPN, 6130 Executive Blvd., Rockville, MD
Description: The first objective of this conference was to facilitate continued discussion and team building of pediatric hematopoietic cell transplant physicians and pediatric immunologists to work together to develop a North American consortium for treatment of children with PID. The workshop of May 2008 set in motion an important collaborative effort. This new workshop focused on challenging aspects of SCID/CID not previously addressed. Other objectives were to (2) conduct a survey of current practices in the workup and management of children with SCID/CID in preparation for HCT, (3) identify questions for future clinical research by utilizing the results of the survey, and (4) develop best current practice parameters (or guidelines) in this area. The document will be published in a respected peer-reviewed journal.
Fifth International Meeting of Gene and Cell Therapies for Arthritis and Related Diseases, Tuesday, April 29, 2008 - Thursday, May 01, 2008
Location: Bell Harbor Conference Center, Seattle, WA
Description: The goals of this meeting were to share advances in cellular biology that offer the opportunity to harness regulatory immune cells to combat autoimmune disease, to harness the use of multipotent progenitor cells to augment tissue regeneration and repair, and to accelerate the development of molecular and cellular therapies for rheumatologic and orthopaedic disorders. The GTARD conference series was initiated 9 years ago as a dedicated forum for investigators performing research in these areas to review and discuss scientific progress and to share ideas and technologies. Proceedings from the first three meetings have been published and proceedings from the 2006 meeting are currently in revision. The proceedings from this meeting will be similarly published.
Workshop on Registries for Primary Immunodeficiency Diseases, Tuesday, November 19, 1996
Location: NIH Campus, Bethesda, MD