Dr. Nicole Rochester’s father struggled with many health problems including dementia, heart disease, diabetes, kidney disease, and obesity. When she and her two older sisters began caring for him and she found herself in charge of his medical care, she realized just how muddled management of his diseases had become. Prescriptions overlapped, diet and exercise were neglected, and information sharing between specialists didn’t occur.
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The Food and Drug Administration (FDA) recently approved Orencia for use in the prevention of graft versus host disease (GVHD).
“The Cleaning Lady,” a new television drama, spreads much-needed awareness about persons with rare primary immunodeficiencies, but ultimately falls prey to tropes that don't accurately depict families dealing with such complicated diagnoses.
On December 7, the U.S. Food & Drug Administration (FDA) has approved cutaquig® [Immune globulin, Subcutaneous (Human)-hipp, 16.5% Solution] for the treatment of pediatric patients age 2 and older with primary humoral immunodeficiency (PI). The FDA previously approved cutaquig® for adults with PI.
The fourth annual SCID Compass Summit is set for June 23-24, 2022. The two-day event will be virtual and offer an opportunity for connection, learning, and sharing of ideas about severe combined immunodeficiency. Stay tuned for an announcement of speakers and topics and registration information in early 2022.
From 11 am - 1pm (ET) today, IDF will host many of its industry partners in a unique expo-like event to help bring awareness to their patient voice.
CLICK HERE>> TO JOIN TODAY'S EVENT
In an effort to seek new solutions, IDF is sponsoring a White Paper Challenge and invites submissions to address:
Dear Members of the IDF Community,
We hope you are weathering well, with all consideration for the challenges of our time. We welcome the start of a new season with cautious optimism and are reaching out with a quick update with positive news.
Long-time IDF constituent and volunteer Felicia Morton will moderate two CGD-specific sessions at the 2021 Rare of the Rare Summit set for Oct. 1-2.
Recently published in the August 2021 Issue of Clinical Immunology is an article entitled "Expectations and experience: Parent and patient perspectives regarding treatment for Severe Combined Immunodeficiency (SCID)", co-authored by Heather Smith, Christopher Scalchunes, Morton J.Cowan, JenniferPuck, and JenniferHeimall. The survey was designed and distributed to families of individuals with SCID. Among the questions were SCID genotype and treatment, individual recollections of pre-treatment counseling, and present clinical status.
Of the 151 surveys analyzed: