We provide a hemophilia support group for pediatric patients and families, as well as a week-long summer camp program for children.
Patients, families and providers have access to a 24/7 emergency hotline, staffed by hemophilia clinical nurse specialists with backup from DHMC pediatric and adult hematologists. We provide written, community-based emergency plans of care for each patient.
All patients with moderate or severe hemophilia are candidates for home IV factor infusion. Currently 90 percent of patients meeting this requirement are over 5 years of age, self-infuse or are infused by a family member.
Other patient programs include:
- Factor replacement products
- On-site diagnostic coagulation laboratory providing rapid turnaround for factor assays and other specialized studies, including platelet aggregations
- Patient Registry that facilitates rapid and appropriate emergency treatment
- Qualitative and quantitative assays for diagnosing bleeding and thrombosing disorders
- Risk assessment and risk management in patients with idiopathic and cancer-associated thrombosis
- Management of therapy-resistant thrombosis
- Genetic counseling for bleeding and thrombosing disorders, and testing of susceptible individuals
- Anticoagulant clinic patient management
- Screening for viral exposure associated with clotting factor and for joint morbidity associated with congenital bleeding disorders
Outreach and support programs
The program currently receives federal grant money that supports community outreach such as school visits, home visits, education of community physicians, nurses, and emergency room personnel. We provide a hemophilia support group for pediatric patients and families, as well as a week-long summer camp for children.