Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC) is one of the many rare diseases lacking awareness and collaborative research. Consequently, an interdisciplinary team of international experts (including nephrologists, urologists, geneticists, radiologists, oncologists, dermatologists, pathologists and gynecologists from countries all around the world), basic researchers and patient advocates has set out to establish the HLRCC Alliance in collaboration with the HLRCC Foundation.

The mission of this alliance focusses on improving quality of life and health for patients with HLRCC through providing a platform for patient advocacy initiatives, research, excellent education and networking of caregivers, researchers, patients and their families.

This survey intends to estimate how many HLRCC patients are treated in various centres and in a long-term to develop a HLRCC patient-registry as part of the ERKReg rare kidney diseases registry.

Thank you for participating and if you would like to receive more information or if you would like to collaborate in this initiative, we will contact you via Email. The email address will not be shared with third-parties.

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* 1. Please list your country and organization (site of patient treatment).

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* 2. Please indicate your medical specialty

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* 3. Please indicate if you are affiliated with an European Reference Network

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* 4. Have you treated patients in the past or do you presently treat patients with an established diagnosis of HLRCC (Hereditary leiomyomatosis and renal cell carcinoma)?

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