The FDA has just provided Orphan Drug Designation to Hizentra for the treatment of adults diagnosed with chronic inflammatory demyelinating polyneuropathy (CIPD). This is a maintenance therapy which works to…
By Danielle Bradshaw from In The Cloud Copy Scientific teams at the Centers for Disease Control (CDC), the National Institute of Environmental Health Sciences (NIEHS), and other research centers have…
By Rachel Whetstone from In The Cloud Copy For millions of Americans who are affected by rare diseases, hope and health lies in the availability of plasma donations. One use…
With over 500,000 people affected by primary immunodeficiencies in the United States alone, experts are looking for ways to help doctors manage the needs of these patients. One significant…
WHIM Syndrome WHIM syndrome is a form of primary immunodeficiency. It is caused by a mutation in the CXCR4 gene. WHIM stands for Warts, Hypogammaglobulinemia, Infections, and Myelokathexis. Throughout their…
Speakers: Linda Anastasia, RN, BSN, CPN, IgCN Janet Richards To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register,…
A New Study A recent study published in Nature Immunology and conducted by researchers at the University of Basel has produced influential results regarding primary immunodeficiency disorders (PID). These rare disorders…
Speakers: Darlene Madore MSN, APRN, CPNP-PC, BSN, RN Melaine Ziegler To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And…
Speakers: Wendy Holz RN, MSN, CPNP Annette Gregory To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click…
Speakers: Linda Anastasia, RN, BSN, CPN, IgCN Lynne Doebber To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click here.…
According to a story from Cape Town Etc, two girls in South Africa were living with the same rare disease: primary immunodeficiency (PI), a group of rare conditions in which…
Speakers: Carla Duff, ARNP, CPNP-PC, MSN, CCRP, IgCN Melaine Ziegler To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click…
Speakers: Darlene Madore, MSN, APRN, CPNP-PC, BSN, RN Annette Gregory To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to…
Speakers: Darlene Madore MSN, APRN, CPNP-PC, BSN, RN Eric Nixon To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to…
A recent publication from Healio detailed some of the challenges immunocompromised individuals might face during flu season. Influenza is a common and sometimes serious public health concern around the world, and…
Speakers: Linda Anastasia, RN, BSN, CPN, IgCN Melaine Ziegler To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click here.…
A recent publication from Specialty Pharmacy Times noted that the rapidly-growing number of available human immunoglobulin treatments for primary immunodeficiency disorders could pose challenges for specialty pharmacists when treating patients.…
Speakers: Marianne Anzabi, RN, CPN Traci Davies To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This…
According to a story from the Warwick Beacon, the first ever primary immunodeficiency (PI) awareness and fundraising walk in Rhode Island's history was held recently at Warwick City Park. The…
Speakers: Carla Duff, ARNP Annette Gregory To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to register, click here. Acknowledgment: This…
Speakers: Carl Schlacht Carla Duff, ANP To register for this webinar, click here. To read more about PI Webinar Wednesdays, click here. Acknowledgment: This event post is sponsored by CSL Behring…
According to a publication from BioSpace, New Jersey-based Kedrion Biopharma recently announced the enrollment of the first participant in their CARES10 study. CARES10 is a phase 3 study of a…
According to a story from The Indian Express, early treatment and diagnosis of primary immunodeficiencies makes management of this group of disease much simpler as a whole. In children, the…
Vicki and Fred Modell have spent years since their son’s death in the 90's advocating for more research and assistance to be provided to those with primary immunodeficiency disease. Their…
Heather White Heather White is a 41-year-old woman who was diagnosed with common variable immune deficiency (CVID) back in 2004 after fighting frequent bouts of pneumonia. Doctors believe that she…
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