Orphan Europe Cystinosis Patients/Experts Half-Day Meeting – 14th June 2018

On 14th-15th June 2018, Orphan Europe will be hosting the 3rd Ophthalmology Cystinosis Forum. This event will take place at the Radisson Blu Edwardian Kenilworth Hotel, 97 Great Russell St, Fitzrovia, London WC1B 3LB.

The full OCF day on Friday 15th June will gather approx. 50 key experts from several countries, committed to the management of Cystinosis and its ocular complications.

The programme will cover the following objectives, chaired by Prof. William van t`Hoff, from Great Ormond Street Hospital.

1. Nephrologists/Ophthalmologists interaction for a multidisciplinary care

2. Clinical presentation beyond technical ophthalmic measures

3. Real life experience of unique 0. 55% cysteamine eye drops therapy

A half-a-day meeting will precede this event on the afternoon of Thursday 14th June, dedicated to Patients` Associations; this `patient/experts` half-day meeting will be held with a limited number of patient representatives, along with several clinical experts to improve knowledge & help develop more coordinated Cystinosis care.

Patients and physicians in this half a day meeting will learn from one another, about their needs, focus points, constraints and solutions.

All Cystinosis patients are welcome (and/or their parents/carers), as the delegate list will include an array of multi-disciplinary experts. However, the meeting will undoubtedly be of particular interest to those patients of any age that have particularly severe or troublesome ocular symptoms, or indeed any patients suffering uniquely from the rarer, and generally late-onset `Ocular Cystinosis only` condition (with no nephropathic/systemic involvement).

Would you like to attend the patient/experts half-day meeting on 14th July 2018? If so, please get in touch with us ASAP. Some patients may well be invited to partake in the following days` meeting designed for expert discussion & clinical education, if mutually practical.

Patient/Experts Half Day 2018 – Event Poster (PDF)

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