Beacon for Rare Diseases

Call Directions Website

Beacon for Rare Diseases Beacon is a UK-based charity that is building a united rare disease community with patient groups

Beacon (previously known as Findacure) is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Our patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through our events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, we believe that no one should face their rare journey alone. Our vision

A world in which no one faces their rare journey alone. Our mission

To build a united rare disease community with patient groups at its heart.

It's World Mental Health Day! 🧠We know just how important sharing your feelings can be for looking after your mental hea...
10/10/2026

It's World Mental Health Day! 🧠

We know just how important sharing your feelings can be for looking after your mental health and wellbeing, especially as living with a rare condition can impact mental health in different ways.

To celebrate World Mental Health Day, we're shining a spotlight on our friends at Rareminds, a brilliant charity who provide specialist mental health services for the rare community.

They featured on Season two of our podcast, Rarely Heard, where Stephanie Yin from Rareminds explored the interplay between physical and mental health and how mental health services need to be intergrated into rare disease care.

After all, there is no health without mental health.

Head over to our Rarely Heard page to hear more 👉https://loom.ly/BBo8dps

Their own podcast champions the voices of those living with rare conditions, from talking about mindfulness to experiences of coping with fatigue.

You listen to their brilliant podcast here 👉https://loom.ly/ShSe3ZU

We had an amazing time on Wednesday at Cambridge Rare Disease Network's Rare Summit 26 at the Wellcome Genome Campus!The...
09/10/2026

We had an amazing time on Wednesday at Cambridge Rare Disease Network's Rare Summit 26 at the Wellcome Genome Campus!

The day was packed full of brilliant insights from lectures, workshops and exhibitors.

Thank you for coming to see us if you chatted to us at our Beacon stand! It was lovely to meet old and new connections. 🧡

Some key highlights for us included:

- Hearing Gavin Hepherd Hall from Rare4Schools explain how we need to be advocating for those with rare diseases - empathy does nothing without action- we need more compassion. We couldn't agree more!

- Seeing Jonathan Bracey from The MVA Society , who is part of our mentoring programme, on the 'Champions of Rare' panel, talking about his patient group's journey and all the amazing things they've been up to.

- Hearing from Dr Juliette Harris from the National EDS Service London and Jacqui Fish from Annabelle's Challenge Vascular EDS Charity in their collaborative talk about navigating self advocacy skills, from mental health support to being prepared for emergencies.

-Learning about Steven Jones' personal story of living with SMA, and his lived experience of healthcare.

We heard so many other unique insights into rare disease policy, research, lived experience and innovation - it was such a thought-provoking day!

Thank you CamRARE for an amazing day of connectivity in the rare space.

Bring on next year! 🥳

Today we're raising awareness of NCBRS (Nicolaides-Baraitser Syndrome) as part of global NCBRS Day! NCBRS is caused by a...
09/10/2026

Today we're raising awareness of NCBRS (Nicolaides-Baraitser Syndrome) as part of global NCBRS Day!

NCBRS is caused by a small change in the SMARCA2 gene located on chromosome 9. The condition was first described in 1993, but the gene behind it was identified in 2012.

There are currently fewer than 340 documented cases worldwide.🌍

NCBRS Worldwide Foundation's goal is to create a global community where families, healthcare professionals and researchers work together to ensure that every person diagnosed with Nicolaides-Baraitser Syndrome has every opportunity to reach their full potential.

Read more about NCBRS over on their website 👉https://loom.ly/kS0SLdk

The RareCare reports are now published! 📢RareCare is an NIHR - Health and Care Research-funded evaluation of the UK Rare...
08/10/2026

The RareCare reports are now published! 📢

RareCare is an NIHR - Health and Care Research-funded evaluation of the UK Rare Diseases Framework and England’s Rare Diseases Action Plans.

The reports bring together evidence from people living with rare diseases, carers, healthcare professionals, patient organisations, peer researchers, and routine health data analysis.

They highlight an important message for future rare disease policy:

Activity and infrastructure matter, but they must translate into better diagnosis, care, coordination, access and support for people living with rare diseases and their families.

A key message from RareCare is that future rare disease policy needs to consider:

• System-level change
• Service-level delivery
• Lived experience and family impact

RareCare should be an important evidence source for the next phase of rare disease policy.

Read the reports here👉 https://loom.ly/mFcRN3E

08/10/2026

Less than 2 weeks to go to complete our Patient Group Survey!🕜

Contribute to sector-wide recommendations for the rare disease community so that patient groups can be better better recognised, resourced and compensated for their vital work.

Take the survey before 19th October👉https://loom.ly/sdhC7jE

Last week, our Head of Patient Group Programmes, Hannah and our Senior Digital and Engagement Manager, Blayne, attended ...
07/10/2026

Last week, our Head of Patient Group Programmes, Hannah and our Senior Digital and Engagement Manager, Blayne, attended the RareXchange Summit 2026 down in London.

RareXchange is a community of rare disease leaders and advocates working together to improve rare disease and specialised services through collaboration, shared experience and collective action.

It was a day of collaborative learning for Hannah and Blayne, who joined prominent leaders in clinical research and patient advocacy to swap ideas, insights, and frameworks that empower everyone's work. 🤝

Topics discussed included:

- The new rare disease commissioning landscape
- Setting up or expanding a specialised service
- NICE Quality Standard for Rare Diseases
- Coordination of care
- Succession planning
- Reducing inequalities
- And more!

Thank you to Alexion Pharmaceuticals for making this summit possible and to the speakers who gave us tons of food for thought through the day.

Better Together: spaces for our patient group collaboration workshop are now open 🥳Discover why research collaboration m...
06/10/2026

Better Together: spaces for our patient group collaboration workshop are now open 🥳

Discover why research collaboration matters now more than ever...

Date: 11th November, 10:00 - 16:00 📅

Location: Lynton House, 7-12 Tavistock Square, London WC1H 9LT 📍

Rare disease patient groups are stronger when they work together.

It can mean access to wider research networks, shared knowledge, and a stronger collective voice, at a time when resources are scarcer than ever.

However, collaboration between organisations can be challenging, especially when managing groups of different sizes, conditions, priorities and ways of working.

That's why we're running Better Together, a free one-day workshop dedicated to exploring collaboration between patient groups, with a particular focus on research.

You'll have the chance to:

- Hear from a panel of patient groups and researchers with first-hand experience of research collaboration
- Listen to real case studies from patient groups, including the L*D Collaborative, Rett UK and Pitt Hopkins UK
- Get involved in a practical session on where to get started, led by Yasmin Glover from The Olive
- Take part in interactive activities and peer discussion

Register for your free place to learn more about research collaboration 👉https://loom.ly/GRVEfPc

Making an impact doesn’t always need to be difficult. Sometimes taking some time out of your day to share your experienc...
05/10/2026

Making an impact doesn’t always need to be difficult.

Sometimes taking some time out of your day to share your experience makes all the difference. 🧡

Our Rare Insights patient group leader survey makes it easy to be a part of the change.

All you need to do is set aside some time and answer our questions on your rare patient group’s value, impact and challenges.

Grab a cup of tea and share your story! 🍵

You’ll need operational and financial information to hand to make filling it out as smooth as possible.

Together, we can improve the support for rare patient groups. Our report will provide sector-wide recommendations for the rare disease community so that patient groups can be better recognised, appreciated and compensated for their vital work.

We’re halfway there in our ambitious target of 100 patient group responses - we need your voice!

Help us get over the line and join us in creating change.

Find out more about our Rare Insights Study and take the survey over on our website👉https://loom.ly/sdhC7jE

Last week we attended the Celebratory Symposium on Childhood Rare Disease Research at UCL Great Ormond Street Institute ...
02/10/2026

Last week we attended the Celebratory Symposium on Childhood Rare Disease Research at UCL Great Ormond Street Institute of Child Health. 👏

The event celebrated collaboration and the impact of the UCL Great Ormond Street Institute of Child Health and the British Paediatric Surveillance Unit (BPSU).

As an exhibitor, we had the brilliant opportunity to showcase some of our own work in the rare disease space and chat to both new and familiar faces.

We heard some great talks, ranging from case studies of childhood rare disease to information on newborn screening.

Our highlights included:

- Perspectives on childhood rare disease in talks from Joe Rumney & Emma Bishop from RARE Revolution Magazine, who highlighted the Rare Youth and the Sibling studies.
- A talk on gene therapies for rare immunodeficiencies, by Prof Claire Booth, Zayed Centre for Research into Rare Diseases in Children.
- A range of case studies about the impact of the BPSU (British Paediatric Surveillance Unit)’s work
- An insightful session on newborn screening for rare disease with talks about the generation study from David Bick, Genomics England, and from Nick Meade, Genetic Alliance UK, on supporting families affected by rare diseases.

Thank you so much for having us UCL Great Ormond Street Institute of Child Health!

Address

Beacon For Rare Diseases C/o Cambridge & District Citizens Advice Bureau
Cambridge
CB12BL

Telephone

+441223865888

Website

Alerts

Be the first to know and let us send you an email when Beacon for Rare Diseases posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category