latest news

Latest News, Events, Podcasts, Articles, Fundraising and Conferences that our foundation has been a part of. Explore with us!

10 Things to Know about AK

We have created a helpful leaflet with essential information about Acanthamoeba keratitis 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.

If you require it in a different format, please don’t hesitate to contact us, and we’ll be happy to assist you.

World EPA Congress 2024

Our Founder, Juliette Vila Sinclair Spence, spoke at the World EPA Congress in Amsterdam on March 12-13, 2024. She was a 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). Together, they discussed the obstacles and solutions to medicine access for patients with rare diseases.

SICSSO Congress 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, 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.

Juliette was invited to share the patient’s perspective on AK – see video

A Rare Knight Fundraising 2023

Juliette Vila Sinclair-Spence, the founder of the Acanthamoeba Keratitis Eye Foundation, recently 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 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

A Successful Fundraiser for Acanthamoeba Keratitis Eye Foundation. In September, Jelle Kleijn paddled a staggering 210 km nonstop over 2 days to raise money for the Acanthamoeba Keratitis Eye Foundation. Despite the inclement weather, we all got soaked for a good cause, and we are proud to say that he raised an incredible amount of 5,000 Euros for the foundation.