Beacon for rare diseases • 28th March 2025

Nick Sireau: Beacon Co-Founder continues fight for better patient outcomes - Beacon for rare diseases

At the end of 2024, Beacon’s co-founder and Chair Nick Sireau stepped down from our Trustee Board after twelve years with the charity.
This blog is written by one of our volunteers, Madison James, who recently interviewed Nick to hear more about his story and his connection to rare diseases.

Islington Now • 20th March 2025

Number 19 bus route turns vintage

Londoners will be able to ride vintage buses on the number 19 bus route – Finsbury Park -Battersea Bridge – for free on Saturday, 29 March.

Islington Now • 19th March 2025

David Nicholls in Conversation with Islington Now: “It’s hard not doing something you love”

Author David Nicholls on the anxiety that comes with finding your calling.

Islington Now • 19th March 2025

Islington Council launches proposal to stop locking parks

Islington Council has launched a proposal to stop locking park gates at night in a bid to save money.

Islington Now • 11th March 2025

Liverpool Road residents say LTN will make ‘dangerous’ traffic worse

The problem of Low Traffic Neighbourhoods (LTNs) funnelling traffic into Islington’s residential streets has resulted in “off the scale” congestion on Liverpool Road in Barnsbury, according to locals.

Boutique Hotel News • 21st January 2025

Miiro names general manager for Templeton Garden hotel

Nicola James has been appointed general manager of the luxury hotel Templeton Garden ahead of its opening in Earl’s Court, London, this year.

scribbled. • 15th December 2024

Essay: Friendship, Loss, and The Final Dialogue Between Michel de Montaigne and Étienne de La Boétie

This essay investigates the implications that the loss of La Boétie had for Montaigne’s perspective on the philosophical question that most occupied and haunted him: can a man ever make peace with his own death?

Madison’s Substack • 1st December 2024

"I love this part of the work": David Nicholls gives talk at Oxfam Books and Music, Islington

It has been a busy year for David Nicholls. Early spring saw the revival of his 2009 book, One Day, in the form of a hit Netflix series. Not only that, but the author landed yet another number one bestseller after his highly anticipated sixth novel, You Are Here, hit the shelves.

Islington Now • 24th October 2024

Barnsbury restaurant owners fear road restriction will be 'bad for business'

Nick Collin, a member of the anti-LTN group, Keep Islington Moving, said he lacked confidence that Islington Council will listen to residents’ concerns. He described the current plan as “disastrous for local businesses.”

La Dépêche • 19th March 2024

Comment la musique peut vous faire tomber amoureux de la langue Française

Parmi tous les musiciens populaires que l'on présente habituellement aux étudiants en français, tels que Stromae ou Angèle, -M-, nom de scène du musicien Matthieu Chedid, n'est pas le premier qui vienne à l'esprit.

Originally published in La Dépêche

Photo by Chris Molloy on Pexels

La Dépêche • 19th March 2024

Paris, ville Marmite - On l'adore ou on la déteste

Ayant passé la majeure partie de l'année à vivre dans la ville de Paris, me retrouver de nouveau dans le bar Bristolien, le Bag of Nails, par une froide soirée de décembre, entourée par des chats endormis et les tasses de cidre chaud, a été une expérience presque surréaliste.

Originally published in La Dépêche

17th March 2024

Review: Lime Garden @ The Fleece, Bristol, 06/03/24

True to their name, Lime Garden has cultivated a growing following with their refreshing twist on the well-trodden ground of the indie genre and a not-so subtle edge of bitterness.

Photo by Elina Sazonova on Pexels

La Dépêche • 13th March 2024

Issue 6, La Dépêche

Two articles written in French on Marmite-like attitudes towards Paris (p.15-16) and the benefits of listening to French music on language learning (p.17).

SPIN Research Network • 8th March 2024

Essay: Artificial intelligence, disinformation, and state secrecy: Challenges to the legitimacy of the upcoming 2024 United States presidential election

The 2020 United States presidential election was unprecedented in terms of the implications it posed for the legitimacy of elections and for the future of democracy itself.

OK Talk Counselling • 7th March 2024

‘I became a psychotherapist not just to support people, but to find answers.’ An interview with Marina Sabolova, founder of OK Talk, Portishead

Marina Sabolova had wanted to become a psychotherapist since she was a teenager. Determined to better understand herself and those closest to her, she left her home in Slovakia to study in Manchester, spending eight years in training.

“I could see my mum struggling, and I always wanted to help. Once I got qualified, I found out that she lives with OCD.”

EURORDIS • 21st August 2023

Pushing for Improved European Policymaking: An Interview with Kateřina Konečná MEP

In a conversation with MEP Kateřina Konečná, who represents the Czech Republic within The Left group in the European Parliament, we delve into recent EU policy strides on rare diseases.

EURORDIS • 31st July 2023

From Awardee to Board Member: An Interview with Graham Slater

As we look towards the 2024 edition of the Black Pearl Awards, we have been catching up with some of our past Black Pearl Awardees. In an interview with Graham Slater, elected to the EURORDIS Board of Directors in May, we discuss his journey into advocacy, the development of effective holistic care pathways, and the importance of volunteers in the rare disease community.

EURORDIS • 19th July 2023

Meet the young advocates making a difference for our rare disease community

To shine a spotlight on Europe’s own young rare disease advocates, we have spoken to some inspiring advocates about their experiences, their achievements, and hopes for a better tomorrow for people living with a rare condition.

EURORDIS • 15th June 2023

'Yesterday’s science fiction is tomorrow’s clinical service improvement': An Interview with Alastair Kent OBE

In an interview with Alastair Kent OBE, former Executive Director of Genetic Alliance UK, we discuss his path into advocacy, the EU’s progressing legislative reforms to the Orphan Medicinal Products Regulation, mental wellbeing in the rare disease community

EURORDIS • 28th May 2023

Mental Wellbeing in the Rare Disease Community: An interview with ALAN - Maladies Rares Luxembourg

In an interview with Daniel Theisen, Director of ALAN – Maladies Rares Luxembourg, we discuss what his organisation has been doing to combat the mental wellbeing challenges facing the rare disease community.

Epigram • 23rd May 2023

Paris: City of Impressions

In a city the world has immortalised, what are the lasting impressions of a local? Madison recalls her time in Paris, and the beauty of the everyday that she found there.

The Croft • 9th May 2023

Paris: City of Impressions

Paris: City of Impressions. Originally published in print in the travel section of Epigram's magazine, the Croft.

EURORDIS • 18th April 2023

A look at #EMM2023: Exchanging views and ideas for a better future

The 2023 EURORDIS Membership Meeting taking place on 25-27 May in Stockholm will bring together people from across Europe’s rare disease community.

Her Campus | Created for Gen Z, By Gen Z. • 1st March 2023

“I have to sacrifice my grades or my mental health” – how the cost of living crisis is impacting young people

Speaking earlier this month, Chancellor Jeremy Hunt’s announced that the UK has narrowly avoided a recession, seeing zero economic growth towards the end of 2022. The situation remains precarious.