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Manifiesto Sociale: Cheratite da Acanthamoeba: Rara, Subdola e Oggi Curabile

December 2024 – Our Italian ambassador and AK Warrior, Alvise Callegari, together with AK Warrior Alice Sotero (Fiamme Azzurre), an Italian pentathlete with Olympic participation in 2024, took part in the social manifesto on Acanthamoeba keratitis, rare, insidious and now curable, which took place on 5 December in Rome.

With the participation of Annalisa Scopinaro, President of UNIAMO,  Filippo Drago, Full Professor of Pharmacology, University of Catania, Alessandra Balestrazzi, President of AIMO, Chiara Bonzano, Medical Director at San Martino Polyclinic Hospital, Genoa, Vincenzo Sarnicola, Honorary President of SICSSO (International Society of Cornea, Stem Cells, and Ocular Surface) and Director of the Sarnicola Eye Clinic in Grosseto, Marcello Portesi, Director of Institutional Projects IHPB, Antonio Di Zazzo, Associate Professor of Ophthalmology at Campus Bio Medico University, Rome, Antonella Franch, Director of the U.O.C. Ophthalmology at SS Giovanni e Paolo Hospital, Venice, Antonio Longo, Full Professor of Ophthalmology at the University of Catania, Paolo Rama, IRCCS San Matteo Polyclinic, Pavia, Federico Serra, Head of Technical Secretariat of the Parliamentary Intergroup, Stefano Del Missier, Responsible Director of Italian Health Policy Brief (IHPB), Hon. Matteo Rosso, Co-President of the Parliamentary Intergroup for the Prevention and Treatment of Eye Diseases and Member of the XII COMMISSION (SOCIAL AFFAIRS) of the Chamber of Deputies, Teresa Petrangolini, Coordinator of the Alliance for Equity in Access to Care for Eye Diseases, Carlo Signorelli, Full Professor of Hygiene and Public Health at Vita-Salute San Raffaele University, Milan, Marcello Pani, Secretary General of SIFO and Massimo Nicolo’, Coordinator of the Technical Scientific Committee of the Parliamentary Intergroup for the Prevention and Treatment of Eye Diseases.

Global Alliance Against Acanthamoeba Keratitis (AK) White Paper

November 2024 – After a year of dedicated effort, the Global Alliance Against Acanthamoeba Keratitis (GAACK), a coalition comprising a variety of stakeholders, has unveiled a crucial white paper designed to tackle the challenges presented by Acanthamoeba Keratitis (AK). This partnership includes patients, clinicians, researchers, industry specialists, and regulators who are all focused on preventing AK and enhancing patient outcomes. Their latest white paper addresses vital subjects such as patient perspectives, parasitology, clinical insights, regulatory considerations and prevention strategies.

Among the authors is Juliette Vila Sinclair Spence, who serves as both a patient and the president of the Acanthamoeba Keratitis Eye Foundation, along with several other contributors.

World EPA Congress 2024

March 2024 – Our Founder, Juliette Vila Sinclair Spence, spoke at the World EPA Congress in Amsterdam on March 12-13, 2024. She was part of a distinguished group of professionals, including Durhane Wong-Rieger (Canadian Organization for Rare Disorders), Lorenzo Capretto (Chiesi Global Rare Diseases), Christine Mossa (Ipsen), Michela Pantaleoni (Napo Therapeutics) and Sandrine Ruiz (Immunocore).

10 Things to Know about AK

We have created a helpful leaflet with essential information about AK from a patient’s perspective. Our goal is to increase awareness among the medical community, academia, regulators and other stakeholders involved in the AK journey. We invite you to download and share this leaflet with your colleagues.

SICSSO Congress 2023

June 2023 – From June 29th to July 1st, the SICSSO Congress was held in Sicily, Italy, bringing together a plethora of esteemed eye experts from around the world. Our founder, Juliette Vila Sinclair Spence, was invited to share the patient’s perspective on AK and had the privilege of joining the ranks of clinical experts, including Elmer Tu from the University of Illinois in Chicago, US, Edward J. Holland from the Cincinnati Eye Institute in the US, Karl Anders Knutsson from Ospedale San Raffaele in Italy, Vincenzo Sarnicola, the honorary president of SICSSO in Italy, Enrica Sarnicola, the scientific secretariat of SICCSO in Italy, and Mor Dickman from MUMC+ in the Netherlands.

A Rare Knight Fundraising 2023

March 2023 – Juliette Vila Sinclair-Spence, the founder of the Acanthamoeba Keratitis Eye Foundation, appeared at a fundraiser organized by Avanzanite Bioscience as a patient advocate and representative of the Foundation. During the event, she shared her personal experience with the rare eye infection and explained the Foundation’s goals and objectives. The event raised a total of 4,150.00 EUR for the Foundation, with an additional contribution of 1,000.00 EUR from SIFI.

World EPA Congress 2023

March 2023 – It marked a significant milestone for our organization. Our founder and chairman, Juliette Vila Sinclair Spence, attended the World Evidence Price and Access congress, where she had the chance to network with fascinating individuals, gain insight from a non-patient perspective and participate in a podcast with Partners for Access.

SUP-11 CITY Fundraiser 2022