Finding a doctor experienced in the lysosomal storage disorders is often a challenge for patients. A doctor to guide care and provide a place to receive infusions is what everyone deserves. That access is critical to the best outcomes in the LSDs.
Dr. John Barranger was acutely aware of the needs of many patients related to diagnosis, monitoring, participation in the Registry, and a place to get infusions. Recognizing these unmet needs, he has decided to focus his energy on providing expert care for LSD patients. Through a new approach called the Lysosomal Storage Disease Clinical Care Network, he seeks to provide diagnostic and treatment services to patients in a site as close to their home as possible. At present, he is determining where his clinical sites will be most useful for the LSD community.
Dr. Barranger was the specialized doctor for the disease and responsible for the patient’s case including their examination, collection of results, and advice directly to each patient in the office closest to their home. Availability is key to the sense of being well cared for. Access will be provided 24/7.
Commitment to the development of the knowledge of LSDs is a serious responsibility, which he took as an obligation. Participation in the Registry for each disorder will contribute important knowledge on the disease and its response to treatment. In the LSDCCN sites, contribution of data to Registry will be done and the outcomes of Registry studies shared with patients.
In order to decide where to locate LSDCCN clinics to best serve the community, please contact the LSCCN clinic at 412-734-4672 or email them at firstname.lastname@example.org to let them know where you are and what services you need.
LSDCCN Business Manager