The Hemophilia Center

An OHSU physical therapist working with a hemophilia patient.
The Hemophilia Center is the only regional resource for children and adults with hemophilia and other clotting disorders.

The Hemophilia Center at OHSU is one of 12 federally funded regional hemophilia centers nationwide. We serve people with hereditary bleeding and clotting disorders in Oregon and southwest Washington.

The center serves people with hemophilia A (factor VIII deficiency), hemophilia B (factor IX deficiency) and other hereditary clotting disorders such as von Willebrand's disease, as well as those affected by inherited clotting disorders. As the regional core treatment center, we collaborate with the following centers throughout the Western United States:

We see patients throughout the lifespan (children and adults). Our patients have access to complete care for:

  • Hemophilia
  • Von Willebrand disease
  • Thrombosis
  • Other coagulation disorders

Other services we provide include, but are not limited to:

  • Comprehensive Clinic
  • Physical Therapy
  • Psychology
  • Social Work

Focus of care

You will have access to state-of-the-art, family centered, culturally-sensitive care provided by our clinicians who are specially trained in the treatment of people with bleeding and clotting disorders. Some of these services include:
  • Academic and employment support
  • Family, patient, and school education
  • Genetic testing and counseling
  • Home infusion training and maintenance
  • Insurance assistance
  • Psychosocial support

Clinic for women

In partnership with the OHSU Center for Women's Health, the Hemophilia Center supports clinical programs dedicated solely to the needs of women and adolescent girls with bleeding and clotting conditions.

Research

In addition to our clinical services, we provide access to the most recent advances in research, education, and advocacy. We are an international leader in the development of new therapies with the goal of increasing the quality of life our patients and their families.

OHSU Hemophilia Pharmacy

We offers factor medications to our patients under the federal 340B Factor Program. Through the federal government 340B program, the OHSU Hemophilia Center purchases clotting factor at a discounted price compared to standard market rates. As a not-for-profit program, we reinvest the funds from factor medications into supporting the Hemophilia Centers full range of services and providers.

Camp

Excerpts taken from HFO summer Camp pamphlet:

The Hemophilia Foundation of Oregon ( HFO) began its summer camp program in 1970 and today over than 60 campers from Oregon and SW Washington attend the annual summer camp.

For many of these kids, their week at camp is the highlight  of the summer, and is their only contact with other children with a bleeding disorder.

The camp staff includes an around the clock physician and nurse to assist in medical treatment as the need arises. A counseling staff which includes several adults with bleeding disorders (many of whom were former campers) ensures each youngster a rewarding and enjoyable summer camp experience.

At camp, a positive " can-do" attitude is encouraged rather than focusing on what a youngster is unable to do. During camp, kids are not viewed as children with bleeding disorders, but simply as kids who have a very special medical condition. They swim, shoot baskets, play table tennis, and learn arts and crafts. Cabin groups go on overnight campouts, hike in the woods, and enjoy a program of evening activities, concluding the day with a relaxing campfire. Campers participate as they are capable, each setting his or her own pace. Children with hemophilia or other related bleeding disorders( and their siblings on a space available basis) are encouraged to attend. There is a low minimal registration fee and the Foundation offers a limited number of scholarships.

First steps

The Hemophilia Center at OHSU has held one-day First Steps conferences in Portland. All families with children with a bleeding disorder are invited but the program is primarily for families with infants, toddlers and school age children. The presenters include The Hemophilia Center clinicians, and guest speakers and closes with a panel of young men with bleeding disorders to talk about growing up with a bleeding disorder. The planning committee has included a parent.

The program includes breakfast, lunch and snacks. Childcare has been provided. There is time for families to meet each other and ask experts questions. The program has been held in a hotel at the waterfront and on the hill on the 11thfloor of Doernbecher Children's Hospital. Travel scholarships and assistance with lodging for families coming from a distance have been provided.

Past topics have included Hemophilia & Bleeding Disorders 101, treatment options, sports & recreation, physical therapy, discipline options, genetics, discussion groups, toilet training for toddlers and young children, food and nutrition. There have been "rap groups" for parents to share their experiences and learn from each other. The panel of young adults with hemophilia and other bleeding disorders has been very popular and the men are open to answering all sorts of question.

First Steps is usually held in the beginning of the calendar year and usually in years when a PEP program is no held. First Steps is based on a National Hemophilia Foundation curriculum.

The National Hemophilia Foundation now has a Steps for Living website covers "Education for all life stages." The website http://www.stepsforliving.hemophilia.org is interactive, has games and quizzes, videos and articles you can refer to when the time is right for you. The sections include: The Basics of Bleeding Disorders, First Step (Birth – 8 years), Next Step (9-15 years), Step Up (16-25years), Step Out (25+ years) and Resources.

Peak

An educational program designed by the Hemophilia Foundation of Oregon and the Hemophilia Center at OHSU after a focus group of volunteers and teens met and shared ideas. The program is designed to have 48+educational modules that will be presented in teen-specific events over a 4-6 year time period. Teens could enter the program at any time and not experience a repeat program before they age out.

The educational modules are being designed to help teens successfully transition from living with their parents to living on their own. Modules will be grouped under major concepts such as, but not limited to, leadership, bleeding disorder, education, and self-advocacy. The idea is to offer about 12-14 modules a year through engaging teen programs offered once each quarter of the year. Teen programs will be offered as weekend-long and day-long programs. Outcomes tied to the educational modules and aligned with the NHF Transition Guidelines and CDC Guidelines for Growing will be measured using pre and post-questionnaires and consumer satisfaction surveys. Independent health care behaviors will be emphasized.

Parents Empowering Parents (PEP)

Parents Empowering Parents (PEP) is a weekend retreat program that is presented through collaboration between The Hemophilia Center and Hemophilia Foundation of Oregon. The goal is to improve the relationships between parents, child and the treatment center; increase understanding of the bleeding disorders; improve responses to bleeding episodes and provide parents with skills to effectively parent the child with a bleeding disorder. 

The PEP program was designed to help parents of children and teenagers with bleeding disorders gain skills and insight on the challenges that the bleeding disorder has on the family, parenting styles, communication, discipline, and feelings. The local training team includes a parent with a child with a bleeding disorder, staff from the Hemophilia Foundation of Oregon and clinicians from the Hemophilia Center. The parents are encouraged to attend as couples, but single parents and parents who cannot come as a team are very welcome. 

PEP is a strength based program – building on the parenting abilities parents already have. PEP is a supportive environment. All attendees are parents of children with bleeding disorders. Relationships between the parents who come to a PEP weekend may continue after the weekend has ended. 

The course begins on a Friday evening and finishes on Sunday afternoon. All meals beginning with dinner on Friday through lunch on Sunday and lodging at the hotel/resort are paid through a grant from the National PEP program organization. The cost of transportation to the hotel may be covered if assistance is needed. NO CHILD CARE IS PROVIDED.

Women's Health Care

Because Hemophilia is inherited in an X-linked fashion, the vast majority of people affected by this disorder are boys and men. We, however, identified an unmet need in girls and women with bleeding and clotting disorders who have long been medically underserved.

Dr. Jody Kujovich, an OHSU medical hematologist, began evaluating and treating women with a wide variety of bleeding and clotting disorders in the Women's Hemostasis and Thrombosis Clinic. Dr. Kujovich's clinic is staffed by a team from the Hemophilia Center, and housed in OHSU's Center for Women's Health. Dr. Kujovichis now providing increasingly complex care to women with a range of diagnoses including Von Willebrand disease, symptomatic carriers of hemophilia, immune thrombocytopenia (low platelets), various types of blood clots, and hematology problems complicating pregnancy. The clinic is now an important resource for primary care and specialty providers at OHSU and within the community who refer women with complex bleeding and clotting issues.

Dr. Kristina Haley joined The Hemophilia Center faculty after completing her Pediatric Hematology-Oncology fellowship at OHSU. The addition of Dr. Haley to the staff expanded the services of the Women's Hemostasis and Thrombosis Clinic to provide care to adolescent women with bleeding and clotting disorders. The Young Women's Hematology Clinic-deemed "Spots, Dots and Clots" opened in October 2013. Spots, Dots and Clots Clinic is also located in the Center for Women's Health, alongside Dr. Kujovich's clinic. Dr. Haley sees girls and young women ages 12-18 years who are referred for evaluation of abnormal bleeding or clotting. It is the first of its kind on the West Coast and joins a small group of similar clinics across the United States.  Dr Haley's clinic provides specialized care to a population of patients with bleeding and clotting disorders that make common everyday experiences like menstrual periods and selecting oral contraceptives a clinical challenge.

Research plays an important role in the care provided to patients and their families affected by bleeding and clotting disorders. Expanding knowledge around bleeding and clotting disorders leads to improved interventions and progress in improving the lives affected individuals.

The Hemophilia Center at Oregon Health & Science University participates in the Universal Data Collection [UDC] through the Centers for Disease Control and Prevention. This project was established to provide comprehensive health management and prevention services. The UDC project promotes multi-disciplinary teams of healthcare specialists, state-of-the-art clinical research programs, outreach and education programs, and blood safety monitoring and surveillance. It additionally monitors the safety of treatment products in terms of infectious disease and inhibitors, UDC data are used to identify risk factors for complications and monitor the effectiveness of interventions designed to reduce these complications. This data will also serve as the foundation for a national database for clinical research.

We are also involved in multiple clinical studies testing new factor products for those affected by bleeding disorders and investigating some of the complications of living with a lifelong bleeding or clotting disorder. Studies are currently active for moderate and severe Hemophilia A and B patients and Hemophilia A or B patients with inhibitors.
Learn more about clinical studies - ClinicalTrials.gov

The Hemophilia Center is also on the forefront in basic and translational research working to define some of the known complications of bleeding and clotting disorders. We may ask patients to participate in studies when they come to clinic or they may be contacted by phone. Your involvement in studies helps ensure the lives of current and future patients will improve. Participation in studies is voluntary and the best interventions are always offered regardless of participation.

How do I make a referral to the CDRC?

While many insurance companies allow patients to self-refer, we prefer to work directly with each child's primary care physician to ensure collaborative care.

As a result, we do require a physician referral for most of our CDRC patients. Additionally, we have information we need prior to scheduling your initial appointment. 

Please contact our scheduling office to receive the referral packet at:

503 346-0640
Toll-free 877 346-0640
Fax: 503 346-0645
Toll-free fax: 888 346-0645

Doernbecher Children's Hospital
700 S.W. Campus Drive, seventh floor
Portland, OR 97239

Contact us

503 494-8716
Toll-free: 877 346-0640
Fax: 503 346-0645
Toll-free fax: 888 346-0645

Child Development and Rehabilitation Center
707 S.W. Gaines Street
Portland, OR 97239