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.
Insurance Update: Bleeding Disorders and the Affordable Care Act’s Sixth Anniversary
Published on in Beyond Blood
Mike Schiller, MSW, LSW, summarizes the impact the Affordable Care Act has had on patients with bleeding disorders.
More than 5,000 Respond to National Survey of US Hemophilia Treatment Centers
Published on in Beyond Blood
Find answers to what the National HTC Patient Satisfaction Survey is, why it was conducted, and what will be done with the results. See how CHOP was ranked.
Behind-the-scenes Leader: Mary Louise Mattia
Published on in Beyond Blood
Mary Louise Mattia helps make the Hemostasis and Thrombosis Center (HTC) run! She is the HTC program coordinator and data coordinator, and is the voice you hear when you call the HTC office.
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.
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.
Child Life Specialist Joins the Hematology Team
Published on in Beyond Blood
Read about Katie Scarlett's experience as a child life specialist with The Children's Hospital of Philadelphia and the services child life specialists provide to patients and their families.
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
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.