Ciliopathy Alliance

Ciliopathy Alliance The global voice of everyone affected by ciliopathies

The Ciliopathy Alliance is an alliance of medical researchers, doctors and patient organisations representing patients and families suffering from ciliopathy diseases. Ciliopathy diseases are caused by defects in the function or structure of cilia, small hair-like protuberances, like antenna, found on the surface of virtually every cell in the human body. Once thought to be vestigial organs, defec

tive cilia are now understood to underlie a number of devastating genetic conditions including:

Alstrom Syndrome, Laurence-Moon-Bardet-Biedl Syndrome, Nephronophthisis, Orofaciodigital Syndrome, Polycystic Kidney Disease, Primary Ciliary Dyskinesia, Senior-Loken Syndrome, Usher Syndrome. The Alliance was formed to:

•Share knowledge and understanding
•Promote awareness of ciliopathies and the respective patient organizations
•Encourage collaborative research and facilitate where possible
•Apply for research funding from government, trusts and foundations

Thanks for highlighting this issue.
22/07/2026

Thanks for highlighting this issue.

Lord Chris Holmes calls for a taskforce to close the gap in employment for blind and partially sighted people.

Earlier this month, representatives from across the sight loss sector along with a number of employers and visually impaired people came together at the House of Lords for the launch of the Employment Gap Report by Lord Chris Holmes.

Titled Out of Sight – Out of Work, the report calls on the Government and the Department of Work and Pensions to bridge the gap in employment. The current statistic says that 73% of blind or partially sighted people, of working age, in the UK are not in employment.

RNIB Connect Radio’s Toby Davey was at the launch event and spoke with Lord Holmes.

Toby: Chris, tell me how the report came about.

Lord Holmes: I've been interested and concerned about the employment rate for blind and partially sighted people for at least 30 plus years, since I first came across a shocking statistic that pretty much only about one in four of us are in employment.

So, I put a question to the Minister a few months ago, and I thought as a consequence of that response, I should put a report together taking evidence from individuals with lived experience, organisations in this space to put down what are the issues, what are the recommendations for government, for employers to make a change so we don't have to have that same sorry statistic of only one in four blind and partially sighted individuals in employment in the UK. It can't continue to be the case.

Toby: And that's a figure that I've known of for, sort of when I started out in employment a long, time ago. And it hasn't changed. Do you, get a sense of why it hasn't changed?

Lord Holmes: There are a whole series of issues that we set out in the report. There's government policy, there's funding, there's accountability, there's employer attitudes and workplace barriers. There's a lack of data, and technology is perhaps the most interesting because technology has such a potential to be a bridge, but all too often it's a barrier. It can be so enabling, so empowering. But if it's not set up right, if it can't be interoperable with all the systems that an employer has and ensure that the employer's made all of their systems accessible, then the technology can be useless and just exacerbate that exclusion.

Toby: And that's totally true because you have internships and graduation schemes for people leaving university and college and they can't get on them because of the accessibility of the portal that they have to use. So, it can be a bit of a bleak picture for them.

Lord Holmes: We had such positive evidence brought from Thomas Pocklington Trust. They run such a fabulous, positive internship scheme. For everybody who has one of their internships, within six months of finishing, 75% of those are in employment. That is empowerment. And the government need to look at that, to learn from that, and then to scale that alongside Thomas Pocklington Trust, alongside other organisations, because there are so many schemes right now, but the difference isn't being made.

Toby: And that's so true. I mean, we've obviously got the RNIB doing the See Work Differently placements as well. So, there are schemes to get people on that journey into employment. And what are the main recommendations of the report?

Lord Holmes: The key recommendation from the Out of Sight - Out of Work report is that the government need to set up a cross-departmental task force, the Out of Sight - Out of Work task force, based in the DWP, led by the Minister, with cross-departmental reach. Now people might say, why would you have a task force which is just for the issue of blind and partially sighted people? Well, the employment rate for disabled people across the piece is not great, but it is so significantly higher than for blind and partially sighted people. But this is such a stark stat, and it has been so for decades, it warrants a specifically focused task force.

Toby: What's the next steps?

Lord Holmes: The Secretary of State and the Minister will have the report. I'll be meeting with them to get their feedback, their thoughts and to work with them. This is not a party-political issue.

Governments of all persuasion have not addressed this over decades. There's nothing party political about this. I will work with this government to make the changes that are required.

[Image description: Lord Holmes holds up an A4 document that reads: ‘Out of Sight, Out of Work.’]

Congratulations Jo Milne on this fantastic documentary showing what it is like to have Usher Syndrome.
24/06/2026

Congratulations Jo Milne on this fantastic documentary showing what it is like to have Usher Syndrome.

Jo has Usher syndrome — a condition causing progressive deafblindne...

19/05/2026

We are helping to organise the Cilia27 patient day - if you have a ciliopathy or are a carer can you please help us with the planning by completing this short questionnaire? PCD Support UK Bardet-Biedl Syndrome UK Joubert Syndrome & Related Disorders Foundation Retina UK Alström Syndrome UK Usher Kids UK

07/05/2026

Thanks Necia for sharing your personal story

Our trustees, Kerry Leeson-Beevers and Audrey Hughes, contributed to the “Good Practice in Rare Disease PPIE” session at...
06/05/2026

Our trustees, Kerry Leeson-Beevers and Audrey Hughes, contributed to the “Good Practice in Rare Disease PPIE” session at the latest Rare Disease Research UK Annual Conference.

Webinar 11th June Confirmation of Date -
06/05/2026

Webinar 11th June Confirmation of Date -

Just to confirm - the Genetic Alliance UK Rare Diseases Framework Consultation is on Thursday, 11th June at 12 noon. Apologies if we may have confused anyone with the wrong day on the previous email.

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