The Northern California Skeletal Dysplasia Clinic provides a forum for the diagnosis and treatment of skeletal dysplasias throughout the lifespan. Many people with skeletal dysplasias have a variety of medical and social concerns that cannot adequately be addressed by single visits with a pediatrician or internist. To meet their more complex needs, people with skeletal dysplasias require ongoing coordinated treatment by specialists in the field. For this reason, the Skeletal Dysplasia Clinic (SDC) offers patients a unique opportunity to have all their medical needs assessed together, as a whole, by a wide variety of specialists. At clinic visits, depending on individual needs, patients are seen by providers from a wide variety of disciplines, including: genetics, orthopedics, radiology, neurology/neurosurgery, psychosocial, nutrition, nursing, head and neck surgery, physical and occupational therapy, and a representative from the Little People of America (LPA) organization. (The specific role of each of the different providers can be reviewed in more detail by clicking on any one of the blue-underlined specialties.) Since patients typically return to clinic at regular intervals over the years, they have the opportunity to develop working relationships with all of these different providers.

Our multidisciplinary approach provides the patient with both convenient and comprehensive services. The clinic visits are convenient as the patient can be seen by multiple providers at just one appointment and comprehensive because the providers they see are able to consult with one another. After seeing all the patients, the providers meet in a formal setting called the Post-Clinic Conference. At this conference each provider is able to present his/her findings and recommendations to the group. Together the group works to develop a plan tailored to the needs and situation of each individual patient. The recommendations generated from these post-clinic conferences have the benefit of multiple perspectives and the varied experiences of each of the providers attending.

Our goal is to optimize the physical, social, and psychological well-being of our patients by coordinating their care. After the clinic, letters are sent out to each patient detailing the recommendations made. Sometimes these recommendations require further follow-up and coordination. To support patients in their efforts to follow post-clinic recommendations, the Skeletal Dysplasia Clinic provides case management services provided by the clinic coordinators. Most people who attend the Skeletal Dysplasia Clinic will be seen on a regular basis, again depending on individual needs. The post-clinic letters will include an approximate date for each person’s next clinic visit. Patients and their families are invited to contact the Skeletal Dysplasia Clinic staff between clinic visits with any questions or concerns they may have.

The idea for a clinic specializing in the care of individuals with skeletal dysplasias in Northern California was first seriously considered at a regional conference of the Little People of America organization. Doctors from both Kaiser Permanente (Northern California) and Children's Hospital Oakland were attending the conference in order to provide consultations for LPA members in need of medical care. Recognizing the extent of the need for both expert and coordinated care for people with these relatively rare conditions, the doctors from the two medical centers decided to combine their resources to create an ongoing specialized clinic. As a result of their efforts, the Northern California Skeletal Dysplasia Clinic was established in September 1997 and the two hospitals continue to offer 4 joint clinics every year. In addition, Kaiser is able to offer six additional clinics. The collaboration between the two hospitals has made it possible for the combined clinics to provide care for pediatric patients from multiple health systems throughout Northern California. Kaiser's Skeletal Dysplasia Clinic (in conjunction with CHO) is one of five such programs in the United States, and the only one in Northern California, that offers comprehensive, coordinated medical care for people with skeletal dysplasias.