Beacon for Rare Diseases

17/06/2026

Sarah, mum of Jody, a young woman who sadly passed away from a rare brain tumour, needs your help.

Jody had an extremely rare type of brain tumour, which led Sarah to launch a petition to improve support for bereaved families, increase funding, and improve treatments for rare tumours in Jody's honour.

Support Sarah and her daughter Jody by signing her petition 👉https://loom.ly/JmlqPkI

17/06/2026

Come with us to attend the Genomics and Mental Health Research conference at Newnham College!🤗

17/06/2026

We’re sharing this powerful story from HFI Support, featured in Same but Different's Rarity Life magazine.

It explores one family’s journey to a diagnosis of hereditary fructose intolerance (HFI), after months of uncertainty and distressing accusations.

A timely diagnosis changed everything, highlighting the critical importance of awareness in rare conditions.

👉Read the full story: https://loom.ly/txVUWX8

Rarity Life is an online publication that offers those affected by rare disease, disability and cancer the opportunity to create content that is truly inclusive, to unify our collective experience and

17/06/2026

We had such a great day last Friday at the Genomics and Mental Health Research Conference in Newnham College, Cambridge! 🤗

There were so many inspiring speakers, and we enjoyed digesting the depth of information, from lived experience to research studies.

Some key themes cropped up throughout the day, including experiences of a 'postcode lottery' of care, the impact of uncertainty around rare diseases on mental health, and experiences of 'falling through the gaps'. 💡

It was a great call to action to collaborate across patients, patient groups, researchers, and healthcare professionals to improve rare care, ensuring no rare journey is walked alone.



MRC Cognition and Brain Sciences Unit

Cheshire and Wirral Partnership NHS Foundation Trust

16/06/2026

We're sharing Dan's story this men's health week! 🎉

His rare journey began when his daughter Emily was born with multiple rare diagnoses.

He is a proud dad who went on our podcast, Rarely Heard, to speak about fatherhood, mental health and the importance of inclusion.

Listen to Dan in episode 3 of the first season of Rarely Heard, which was produced in partnership with Same but Different 👉https://loom.ly/kw7meMk

16/06/2026

In need of a well-being check in? 🫂

If you're a small charity leader, why not join this free online circle for sharing tips, practice grounding and finding mutual support.

It's part of a bimonthly gathering lead by Flora Raffai, and is bound to leave you feeling less alone, less burned out, and better equipped to take on your next challenge!

Date: Thursday 9th July 4 - 5pm
Location: Online

Sign up now 👉https://loom.ly/yXztWd4

If you'd like a space to be with people who get it, come along to our next wellbeing check-in for small charity leaders. It’s our bimonthly get together to practice grounding, share our experiences and tips, explore a relevant topic together, and hopefully come away feeling less alone, less bruise...

16/06/2026

Have you had a kidney biopsy as a child? Or are you a parent of a child who has? LifeArc want to hear from you! 👋

As a member of the LifeArc Translational Centres for Rare Disease Hub, Beacon works alongside a number of leading rare disease research centres, including the LifeArc-Kidney Research UK Centre for Rare Kidney Diseases.

This centre would like to know more about how people who have had kidney biopsies and their families feel about the tissue that is left over afterwards, to help shape a research project. 💡

Why not spend just 5 minutes completing a short survey to help the centre understand views on this topic?

Your answers are private. No-one will know they came from you. They will not be shared online, but they may help the centre write a report.

Fill in the survey as a patient (children and adults welcome) 👉https://loom.ly/-6Bikhg

Fill in the survey as a parent 👉https://loom.ly/T8hSJSs

15/06/2026

Round of applause for Isla! 👏

Isla, a bright young lover of showjumping, fundraised for Beacon last Thursday at her school charity day! 🐎

She and her classmates wore purple accessories to celebrate. 💜

Isla lives with Juvenile Recurrent Respiratory Papillomatosis (RRP) - also known as laryngeal papillomatosis - an ultra-rare childhood disease. RRP causes small growths called papillomas to develop in the airway. It is caused by exposure to the Human Papillomavirus (HPV).

Despite many children being exposed to HPV during birth, the vast majority never develop RRP. A combination of genetic, immune system, and environmental factors determine whether a child will develop RRP.

The condition only affects a few children per 100,000, making it one of the rarest childhood airway diseases.

Isla has undergone 12 operations in the last 2 years, and often struggles to breathe due to RRP. She is currently hoping to explore a new treatment at Great Ormond Street Hospital and Charity.

Here's to Isla and her wonderful fundraising! 🎉

Learn more about RRP👉 https://loom.ly/5rDwiCA

15/06/2026

Are you a small charity leader? Navigate organisational uncertainty and financial resilience in a warm, collaborative environment at a Bedouin Peace Tent in London! 💡

Make new connections, learn tried-and-tested tools and gain clearer steps for your organisation at this session run by Flora Raffai and Liz Pepler.

Topics to be explored include:

1. How to move from reacting to challenges towards anticipating and preparing for them with greater clarity, steadiness and calm

2. How leadership can create stability during uncertain times

3. How small, thoughtful actions can help organisations adapt and grow

4. How to anticipate possible financial futures, prepare for financial uncertainties and shape purpose-aligned solutions

And more!

Location: St Ethelburga's Centre for Reconciliation and Peace Venue, London
Date: 2nd July

Find out more and get your ticket 👉https://loom.ly/0Ffwet4

Navigating organisational uncertainties and financial realities with collective wisdom and practical tools.

12/06/2026

LEAP into the 2026 Advocacy Summit! 🎉

Our friends at the The E.WE Foundation are running an advocacy summit to bring together rare disease patients, caregivers, advocates, healthcare professionals, researchers and allies to explore topics from innovations in rare disease to public policy.

The theme is 'Transforming Knowledge and Innovation Into Real-World Impact', and they hope to look at actionable strategies that translate knowledge into measurable impact in the rare disease ecosystem.

For the first time, this event can be attended online as well as in person! 🎉

Date: 24th - 25th June 📅
Location: University of Alabama in Huntsville College of Nursing / Online📍

Find out more and register your interest 👉https://loom.ly/KrMw7xs