Fighting Blindness

Their core work

Fighting Blindness is an Irish charity and patient advocacy organisation focused on inherited retinal diseases (IRDs), most notably Stargardt disease — the most common inherited form of juvenile macular degeneration. In H2020 projects, they contributed as a third-party partner, most likely providing access to patient communities, disease registries, and real-world patient perspectives that academic labs cannot supply on their own. Their involvement in both a genomics-focused training network (StarT) and a drug delivery research network (ORBITAL) indicates they act as a translational bridge between laboratory science and the patient populations who will ultimately benefit. For researchers and companies, they represent a direct channel into the IRD patient community across Europe.

What they specialise in

How they've shifted over time

Their first project (StarT, 2018) was rooted in the molecular science of retinal disease: genomics, transcriptomics, genome editing, stem cell biology, and animal models — understanding the genetic mechanisms of blindness. By 2019, their second engagement (ORBITAL) had shifted decisively toward the therapeutic end of the pipeline: drug delivery, formulations, medical devices, ex vivo and in vivo models, and materials science. This is a clear trajectory from disease understanding to treatment development, which mirrors the broader maturation of the IRD research field as gene therapies and ocular drug platforms moved closer to clinical reality.

Fighting Blindness is moving deeper into the translational and clinical stages of the IRD pipeline — future collaborations are most likely to involve clinical trial patient access, therapy outcome frameworks, or patient registry contributions for ocular drug and device development.

How they like to work

Fighting Blindness has participated exclusively as a third party in both of its H2020 projects, meaning they were engaged by consortium members rather than holding formal partner status or coordinating funding. This is typical for patient advocacy organisations, which contribute non-research assets — patient networks, registries, dissemination reach — rather than laboratory capacity. Working with them means engaging a facilitator, not a research executor: they open doors to patient communities and lend credibility to clinical translation claims.

Despite only two projects, Fighting Blindness sits within consortia totalling 36 unique partners across 13 countries — a surprisingly broad European footprint for a single-country NGO. This reflects the pan-European nature of MSCA training networks, where patient organisations are deliberately included to ensure research connects with real-world disease communities.

What sets them apart

As the only Irish retinal disease charity with documented participation in multiple Marie Skłodowska-Curie training networks, Fighting Blindness occupies a rare niche: a nationally rooted patient advocacy body that is credibly embedded in frontier European research consortia. For any consortium building a project around inherited eye diseases, ocular gene therapy, or retinal drug delivery, Fighting Blindness provides something no university partner can replicate — direct, organised access to patients, caregivers, and the advocacy infrastructure needed to demonstrate societal impact. Their dual engagement with both the genetic science and the therapy delivery sides of IRD research makes them unusually versatile for a non-research body.

Highlights from their portfolio

• StarT
  A dedicated pan-European training network for Stargardt disease — one of the most focused MSCA-ITN programmes on a single inherited retinal condition — where Fighting Blindness connected cutting-edge genomics and gene editing research directly to the patient community.
• ORBITAL
  An integrated ocular research training network spanning drug delivery, medical devices, and in vivo/ex vivo models, representing Fighting Blindness's expansion from advocacy into the therapeutic translation pipeline for posterior segment eye diseases.