Our Partners

Affiliations

We are a proud Member of Rare Diseases international Networks

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 1000 rare disease patient organisations in 74 countries.

Founded in 2005, the Research Acceleration and Innovation Network (TRAIN) is an affinity network of foundations interested in taking a more strategic and entrepreneurial approach to their role as funders of medical research. 

Global Genes provides hope for the more than 400 million people affected by rare disease around the globe. They are a global community changing the way the world tackles rare disease believing collaboration is the key to positive change.

Genetic alliance uk

Genetic Alliance UK works on a variety of issues that families and individuals with genetic conditions face. They aim to provide information, support families and influence the services needed by these patients.

Our Partners

We are proudly partnering with many international foundations in the eye and rare disease space.

Foundation Fighting Blindness

The mission of the Foundation Fighting Blindness is to fund research that will lead to the prevention, treatment and cures for the entire spectrum of retinal degenerative diseases

Retina UK is a charity, based in England, that works for people affected by inherited sight loss. This includes conditions. The group says that they have provided more than £16 million funding to medical research since they were founded in 1976.

Fight for Sight is a UK charity funding research into the prevention and treatment of blindness and eye disease. Since 1965 the charity has been funding medical research into a wide range of eye conditions, including a wide range of inherited eye diseases and the causes of childhood blindness.

Retina italia onlus

Retina Italia Onlus  fights against hereditary retinal dystrophies. Its main purpose is the promotion and development of scientific research for identifying the causes, treatment and prevention of pathologies that determine low vision and blindness.

LifeArc is a British life science medical research charity. LifeArc uses funds from royalty payments to provide grants into rare disease research and allocates seed funding to UK companies.

Fondazione Telethon logo

The Fondazione Telethon is a non-profit organization recognized by the Ministry of University and Scientific and Technological Research. The task of the Foundation is to manage and promote fundraising initiatives, manage the funds raised to allocate them to internal research and external.

Beacon for rare diseases

Beacon (formerly known as Findacure) is a UK-based charity that is building a united rare disease community with patient groups at its heart. The charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. 

Hope in focus logo

Founded in 2014 as Sofia Sees Hope, Hope in Focus is a nonprofit 501(c)3 patient advocacy organization dedicated to generating awareness, raising funds for research, and providing support, education and outreach to the LCA and rare inherited retinal disease community.

RETINA international

Retina International (RI) is a global umbrella organisation for patient-led charities and foundations who support research into rare, genetically inherited and age-related forms of retinal disease.

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