It’s not every day that I can help bring primary immunodeficiency diseases to the national stage. On Wednesday, July 8, the White House recognized nine individuals as “Champions of Change” in Precision Medicine, and I was honored to be one…

New Grants are now available to support research which uses data from the USIDNET Registry. Grants of $5,000, $10,000, or $20,000 will be awarded for research intended for publication. The application deadline is December 15 2014. Awards will be made…

USIDNET’s protocol for the Patient Registry was renewed by the Schulman and Associates IRB last month. The most current documents are available for viewing on our IRB Resource Documents page. Modifiable templates of our protocol and informed consent are also…

A new article published by Vivian Hernandez-Trujillo, et al. in the Journal of Clinical Immunology in June combined data from the USIDNET Patient Registry with data obtained from a web-based patient survey conducted by the Immune Deficiency Foundation to examine…

Richard Ivan Schiff (November 25, 1946 – July 4, 2014) Richard Ivan Schiff died unexpectedly at his home on Raccoon Point on 4 July 2014 at age 67. Richard completed his undergraduate studies at George Washington University, medical and graduate…

A joint symposium for researchers and clinicians on X-Linked Lymphoproliferative Disease (XLP) and Wiskott Aldrich Syndrome (WAS) will be held in London UK, November 3-4, 2014. The symposium offers access to the latest research and analysis related to these rare…

USIDNET and IDF are developing a new data warehouse and cube to improve reporting on the data that’s stored in the USIDNET Registry.