Beyond Blood

Most Recent Articles

Gene Therapy for Hemophilia: Are We There Yet?

Published on in Beyond Blood

Recent gene therapy trial for hemophilia B showed promising results, with patients’ average factor IX level of 32 percent after treatment. CHOP aims to open a hemophilia A gene therapy trial modeled after the hemophilia B trial.

Patient Experience Survey Coming to Clinic

Published on in Beyond Blood

As part of our ongoing goal to provide the best care possible and to collect required data, all patients between the ages of 12 and 22 will be asked to complete a patient experience survey when you come to clinic for your annual comprehensive care visit.

Calendar Created to Support Hemophilia Program at CHOP

Published on in Beyond Blood

One of our HTC families created a fundraising project to support hemophilia research through the CHOP Foundation. The response has been so terrific that Zoe, the sister of our patient “Iron Max,” has upped the fundraising goal multiple times.

Transition Resources for Your Family

Published on in Beyond Blood

CHOP's Transition to Adulthood Program website has a Resources section that includes age-specific tip sheets for parents or guardians and for children and youth, videos and information about in-person workshops that are hosted for families and teens.

Welcome Backpacks for New Patient Families

Published on in Beyond Blood

The HTC has just finished putting together welcome backpacks for patients newly diagnosed with hemophilia. The backpacks include a binder with important information for all new families.

Release of Medical Information for Patients 18 and Older

Published on in Beyond Blood

Patients 18 years and older

When a patient turns 18 years old, by law, he or she is considered an adult. Therefore, medical information that was previously provided to the patient’s parents or guardian can only continue to be provided with the patient’s permission.