Services for Patients With Hemophilia

We offer a wide range of services that enhance every aspect of our patients’ lives. By partnering with you to manage care needs, we empower your child to feel healthy, engage in life, and learn to manage his or her own care as he or she grows into adulthood. Our services include the following: 

Care from multiple hemophilia specialists in one place

A core team of hemophilia specialists, including a hematologist, advanced practice practitioner, nurse educator, medical assistant, and social worker, come together with your family at the center to support your child physically, mentally, socially, and emotionally. By meeting with your family all on the same day, one after another, our providers deliver efficient, holistic care, which saves you from having to make separate visits for medical care, social services, and care education.

Yearly comprehensive visit

Each year, we evaluate your child’s health and well-being during a personalized care conference. Our team, along with specialists from related disciplines, comes together to review your child’s health history and current status to ensure that we are providing the very best and latest care available and addressing any new needs that arise.

We make sure you are cared for from every angle, whether it’s navigating insurance and access to care, including factor replacement therapy and equipment, or supporting your child’s education and activity needs. At the end, you receive a summary of the appointment, mapping out a care plan for the year, including follow-up care.

Ongoing medical management of hemophilia

We partner with you over the course of your child’s life and as he or she grows into adulthood. Your child’s care is coordinated by a designated patient care nurse coordinator who serves as your go-to contact and connects you with the rest of our care team for evaluation, treatment, education sessions, and social services. Our hemophilia experts are readily available for in-person visits, virtual visits, and care support over the phone or via MyChart messaging.

Parent education

You are your child’s main caregiver, so our hemophilia-trained nurse coordinators spend ample time providing education, ensuring that you understand how to best care for your child. Our team empowers you to:

  • Administer factor, a protein that helps your child’s blood clot.
  • Maintain clotting and address active bleeds.
  • Manage port and infusion equipment.
  • Learn about hemophilia and know how to recognize symptoms.
  • Understand when to reach out for help.

You are always welcome to come in for a one-on-one teaching visit or to learn tips on managing your child’s disease.

Telehealth hemophilia services

We offer telehealth visits in between yearly comprehensive visits to ensure that our care is convenient for our patients living out of the area, including interdisciplinary care conferences so that you can meet with several providers at once. Our patient education, postprocedural care, and follow-up care can also be conducted via videos and telehealth appointments. We are happy to partner with your local health care providers, including for emergency hospital care, to ensure that your child receives quality care, close to home. 

Joint care for patients with hemophilia

While joint issues are not very common in children, they can occur with moderate or severe hemophilia, or for anyone with hemophilia who sustains an injury. Young adults and adults can experience joint pain as a result of a lifelong bleeding disorder. Our comprehensive care team includes an orthopedic doctor for joint preservation and joint health. Our dedicated physical therapist helps reverse the effects of joint bleeds by empowering patients to regain strength and motion. 

Teen-to-adult transition support

We provide a seamless transition from our pediatric program to our adult program. Some members of our care team work with both children and adults—including nurses, social workers, and a physician who is board certified in both pediatric and adult care—furthering our commitment to make sure your older child is comfortable moving to adult care. When children become preteens and teens, we empower them to learn about their condition, recognize when they need help, and progressively manage their own care.

Home delivery of hemophilia factor products

The on-site Children’s Home Pharmacy at Stanford Medicine Children’s Health is available to provide responsive delivery of factor and equipment right to your home. The pharmacy seamlessly coordinates your child’s factor, medicine, and equipment needs with your caregiver. Along with factor (including factor for rare bleeding disorders) and medicine, the pharmacy provides IV equipment and supplies, port flush solutions, crutches, braces, etc.

Social services and family support

We understand that caring for a child with hemophilia, or affording care, can be challenging. Our dedicated social workers can help you:

  • Understand hemophilia and learn how to cope with care demands.
  • Enroll in state-funded care plans to help cover the cost of hemophilia factor and care if you’re eligible.
  • Coordinate workplace accommodations and school education plans.
  • Secure transportation, housing, or travel lodging needs.
  • Enroll your child in insurance plans.
  • Get connected to community resources.

Hemophilia family events and camp

Having a child with hemophilia impacts everyone in the family. We work to connect families of children with hemophilia through family events including annual education days, education classes—including Big Stick, which teaches kids how to administer their own IV—discussion groups, advocacy efforts, and joint programs with the Hemophilia Foundation of Northern California. We partner with them during their annual Family Camp, held at Camp Arroyo near Livermore, California, and Camp Hemotion, which is held in June of each year at Camp Oakhurst near Coarsegold, California, for 7-to-14-year-olds with bleeding disorders and their siblings.

Hematology and Gynecology Program

Our Hematology and Gynecology Program addresses the unique needs of young women facing bleeding disorders. We provide coordinated care with a pediatric hematologist and pediatric adolescent gynecologist during one convenient appointment.  

We see patients from birth to age 18 and offer consultation regarding the use of hormonal contraceptives for the medically complex teen. We also help address common pediatric and adolescent conditions that can be complicated by an underlying bleeding disorder. These include such gynecologic concerns as the following:

  • Menstrual and hormonal conditions such as endometriosis and polycystic ovarian syndrome.
  • Heavy and/or irregular menstrual bleeding.
  • Pelvic pain.
  • Ovarian cysts.
  • Abnormal development of the reproductive structures or systems.
  • Pediatric vulvar concerns.

Bleeding clinic for young women with hemophilia

Our collaborative program brings together pediatric hematology and adolescent gynecology to provide care to girls and women with bleeding disorders who are experiencing heavy menstrual periods and the symptoms that accompany them. Doctors help control bleeding, optimize hormones, and manage iron levels to keep young women with hemophilia feeling healthy. Our program is unique on the West Coast and is a service that is provided only at top-tier children’s hospitals like ours.

Pregnancy and delivery planning for women with hemophilia

Women with hemophilia or other rare factor deficiencies need special care when it comes to pregnancy and delivery. We coordinate care with Stanford Medicine Children’s Health’s Johnson Center for Pregnancy and Newborn Services for women with bleeding disorders who often need high-risk OB/GYN and fetal care, as well as tailored care for their newborns. We are unique in providing this service on-site.