Cystinosis Consultation Clinic
To address all aspects of this multi-organ disease, an interdisciplinary consultation clinic for all age groups was established in October 2012 in cooperation with Cystinose Self-Help e.V. www.leben-eben.de. Both children and adults are treated. Patients go through up to 13 specialties in a single day in the sense of a one-stop clinic. The consultation clinic takes place in Rosenheim.
The therapists who previously supported the clinic in Traunstein or Munich will continue to accompany it in Rosenheim.
Upcoming consultation dates:
Children:
19/03/2026 (Thursday)
19/06/2026 (Friday)
16/10/2026 (Friday)
19/11/2026 (Thursday)
Adults
20/03/2026 (Friday)
18/06/2026 (Thursday)
15/10/2026 (Thursday)
20/11/2026 (Friday)
11/12/2026 (Friday)
Please ask Ms. Holla to place you on the waiting list. If you require support with travel costs, please contact Ms. Holla in advance.
Appointments: heike.holla@cystinose-stiftung.de or phone: +49 171 3209639
Further information about the Cystinosis Consultation Clinic
An interdisciplinary approach to a complex disease
While patients in standard care usually have to consult many different specialists and seamless information flow is often lacking, the interdisciplinary Cystinosis Consultation Clinic (ICS) consolidates all relevant examinations into one day and one specialized team. By pooling many patients within the ICS, a high level of expertise in the disease has been developed.
The clinic focuses on three central priorities:
- Care for all age groups, including adults: Due to the rarity of the disease, the uncertain long-term course, and to ensure transition, continuous care is provided.
- Establishing a dedicated interdisciplinary team of healthcare providers: Coordinated care across the entire treatment cycle is essential to address this multi-organ disease.
- Organization as a “one-stop clinic”: To minimize absences from school and work, patients rotate through all relevant specialties in one day. If needed, two additional specialties can be scheduled on a follow-up day.
The treatment complements local care through collaboration with local physicians but does not replace it.
Objectives and key focus areas
Cystinosis is a rare lysosomal storage disorder that affects multiple organ systems and requires long-term interdisciplinary care. The clinic aims to ensure the best possible patient care by focusing on the following aspects:
- Early diagnosis and adjustment of therapy to optimize disease control.
- Interdisciplinary collaboration between nephrology, ophthalmology, endocrinology, gastroenterology, neurology, and other specialties.
- Long-term monitoring to track disease progression and treatment effects.
- Nutritional care to meet the specific metabolic needs of patients.
- Psychosocial support to help patients cope with the chronic condition.
Networking and research
The Cystinosis Consultation Clinic not only provides clinical care but also serves as an interface between research and practice. In cooperation with university research institutions, new therapeutic approaches and optimizations of existing treatment strategies are continuously evaluated. The collected data help to improve understanding of the disease and further enhance patient care.
Conclusion
By combining interdisciplinary care, scientific support, and many years of clinical experience, the Cystinosis Consultation Clinic represents a central point of contact for patients with this rare disease. It offers professionals a valuable platform for the continuous development of diagnostic and therapeutic standards.
