Beyond Usher Syndrome. Two friends and two events in Parma

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Alessandro Mennella, who suffers from Usher syndrome type I. Programmer, communicator, traveler and athlete. For years he runs several marathons with the support of RarePartners, non-profit company dedicated to the development of new therapies and diagnostic tools in the field of rare diseases.

Dario Sorgato, who suffers from Usher syndrome type II. Designer, blogger, writer, traveler. Founder of NoisyVision, for several years he has promoted projects and activities for accessibility for the visually impaired.

Alessandro and Dario met via chat in 2016 and in October in Berlin, where they rode through the city in a tandem bike, guided by friends.

Alessandro and Dario in Berlin

On the occasion of the ninth MediteRRetina Club International Meeting they will be together for two days in Parma.

These are the events where they will be protagonists.

Beyond Usher Syndrome
joint event of two friends who share the same disease, but above all the  same passion for life.

Under the Patronage of
MUNICIPALITY OF PARMA

and of
MediteRRetina Club

NoisyVision and RarePartners

present

Screening of the documentary film
Alessandro Mennella – SONO UNA TESTA DURA (18 ‘)
Dario Sorgato – YELLOWTHEWORLD EVEREST EDITION (47 ‘)
Alessandro and Dario will introduce their films, sharing some aspects of their lives as deafblind

Thursday, May 11
20:30
WOPA Temporary
Via Palermo, 6
Parma

Donation entry.
The evening is dedicated to raising funds for the first meeting for Italian Usher patients Alessandro and Dario are organizing for 2018.

Speech at the conference MediteRRetina Club
Introduction by Dr. Tedesco and Prof. Gandolfi on the importance of the patient’s point of view
Alessandro Mennella – living with Usher Syndrome
Rare Partners and projects for Usher Syndrome
With Us Share: Mario Zanobini Usher Syndrome Foundation – – Fondazione Italia per il dono.
Dario Sorgato, NoisyVision and #YellowTheWorld
For the ‘occasion, the conference will open its doors to the public, particularly in patients with Usher syndrome and their families.

Friday May 12th
17:00
Grand Hotel de la Ville
Largo P. Calamandrei 11
Parma

for information:
info [at] noisyvision.org
info [at] rarepartners.org

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