What is primary immunodeficiency? The Mayo Clinic offers this definition: "PI weakens the immune system and as a result infections or other health problems may occur more often. People with…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
A research study led by Professor Beishi Zheng from Columbia University has studied the immunogenetics of gastrointestinal (GI) cancers. The Study This study demonstrated that individuals who are diagnosed with…
According to a recent article from Pharmacy Times, Octapharma’s cutaquig has been approved by the FDA to treat patients who are 2 years of age or older with primary humoral…
It is extremely important to get the right medications into the hands of patients who need them. Recently, the FDA helped do this for pediatric patients (aged 2+) with primary…
Underserved communities have difficulties when trying to access the resources that are available to the majority. Because of this, more work has to be done to ensure that everyone can…
About a month ago, from June 23-26, The Immune Deficiency Foundation hosted the 2021 Primary Immunodeficiency Conference. The event was the largest gathering of primary immunodeficiency (PI) patients across the…
The Primary Immunodeficiency Conference June 23-26, 2021 This conference is the largest primary immunodeficiency (PI) patient gathering on Earth. Patients, clinicians, and caregivers will come together for this virtual event…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
Rare Disease Day each year on February 28th provides a time for the rare disease community to reflect on the progress of the year, the continued gaps in rare disease…
A recent study has demonstrated that through standardizing the whole genome sequencing process and making it routine for patients, we can improve rare disease diagnosis across the board. Earlier diagnosis…
A New Study A new study, conducted by CLS Behring, has found that a new method of administration for Hizentra as a treatment for primary immunodeficiency (PI), could improve quality…
April 22nd, 2020 heralds the beginning of World Primary Immunodeficiency (PI) Week. This will be the ten year anniversary of the event, which is designed to spread awareness about PI…
Speakers: Dawn Helfrich RN, MSN, APN 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: Michelle Tran, DNP, FNP Stacy Ahearn 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.…
Speakers: Carla Duff ARNP, CPNP-PC, MSN, CCRP, IgCN Carl Schlacht To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to…
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…
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…
Speakers: Wendy Holz, RN, MSN, CPNP Traci Davies To register for this live event, click here. For information on PI Webinar Wedenesdays with this PW collaborator, click here. And to register,…
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 and is…
Speakers: Darlene Madore MSN, APRN, CPNP-PC, BSN, RN Janet Richards To register for this live event, click here. For information on PI Webinar Wednesdays with this PW collaborator, click here. And to…
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…
Speakers: Michelle Tran, DNP, FNP 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.…
Speakers: Michelle Tran, DNP, FNP Angela Kontas 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…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
