RARE Revolution Magazine®

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.
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[RARE Revolution Magazine® @RareRevolutionM]

Thank you so much to RARE Revolution for giving us the keys to their feed today!
We hope you’ve enjoyed learning about our work, events and what we’ve been getting up to this past Q3!
If you like what you’ve seen, follow us at @rarebeacon, and sign up to our newsletter to keep up to date with all things Beacon! https://t.co/B5mTmwvGUu

[RARE Revolution Magazine® @RareRevolutionM]

As it’s our 14th birthday, you may have been following Beacon for a long time. If so, you’ll know we’re big proponents of drug repurposing which is why we’re excited to be bringing the International Drug Repurposing Conference (#iDR27) back! 📢
Date: 15 – 16 June 2027 📅
Location: In-person, 11 Cavendish Square, London, UK 📍
Co-organised with the brilliant REMEDi4ALL, iDR27 will be an opportunity to explore how we can move promising science, ideas, and collaborations further towards patient impact, under the theme ‘Further, Together: From Science to Patient Impact’.
We need your voice in the conversation!
Who knows what doors iDR27 will open…
Registration for iDR27 is now open- claim your early-bird discount now: https://t.co/s5UnjuUPpK

[RARE Revolution Magazine® @RareRevolutionM]

Does your patient organisation want to build stronger partnerships with industry?
Join Beacon’s working with industry workshop - registration is now open!
Date: 2nd December, 10:00 - 16:30 GMT 📅
Location: In-person, The Royal Institution, London 📍
For rare disease patient groups, industry can be a vital partner in driving progress. Companies develop treatments and invest in the research the community needs. Beyond research, they can also help groups raise awareness, influence policy and achieve their wider advocacy goals.
Topics explored in this workshop will include:
- The different ways patient groups can work with industry, and where to start
- How to build trust while staying compliant and managing conflicts of interest
- What a good partnership looks like, and how both sides can set realistic expectations
Register to have the opportunity to talk openly with industry about the challenges and opportunities of partnering: https://t.co/fNeONiYhWd

[RARE Revolution Magazine® @RareRevolutionM]

Read what we've been getting up to here at Beacon in the past quarter of the year in our Q3 blog!
From key conferences to lots of behind the scenes work on our Rare Insights Study, read on to hear what we've been up to in these jam-packed months.
Thank you to our wonderful supporters and followers- we couldn't have done these past few months without you🧡
Read on here: https://t.co/odtkf5Pust

[RARE Revolution Magazine® @RareRevolutionM]

The Cambridge Showcase is back for its 10th year, and we couldn't be more thrilled!
Join us as we kick off Rare Disease Month in style with an evening full of connection, inspiration, and celebration! 🧡
Date: 11th February 2027 | 18:30 – 21:00
Location: The Clayton Hotel, Cambridge
Whether you're looking to meet fellow advocates, connect with leading experts, or spark new collaborations, this is the place to be.
Described as "invaluable to better understand unmet needs and champion the amazing work undertaken in this space," it’s an evening where old friendships meet exciting new ideas.
Throughout #RareShowcase27, you’ll also have the opportunity to hear quick-fire presentations – known as lightning talks – delivered by patient groups, academia, industry and healthcare providers, who’ll share their ideas, progress and achievements in rare diseases.
Interested in speaking? All attendees have the opportunity to submit a lightning talk proposal when registering. Apply before 11th December to be considered! 📢
Plus, we’ve got something extra special up our sleeves... 🥁
We will be officially launching our highly anticipated Rare Insights Report at the showcase! 🙌
Don’t miss out - limited early bird tickets are live right now!
Grab yours before they’re gone: https://t.co/oKQvkHmuvd

[RARE Revolution Magazine® @RareRevolutionM]

Are you looking to help a small charity who supports essential rare disease patient groups?
That's us, hi! 👋
We help patient groups form their foundations and grow in order to build communities and support rare disease research, and today, we’re celebrating our 14th birthday!
Through training, mentoring, community events and research initiatives, we upskill and connect patient organisations locally, nationally and internationally, helping them to grow, professionalise and maximise their impact.
Read more information on what we do and how you can support us 👉https://t.co/LgbbCtLSkl

[RARE Revolution Magazine® @RareRevolutionM]

We’re excited to take over RARE Revolution’s feed today, on our 14th birthday!
Here at Beacon, we have one mission: to ensure no rare journey is walked alone.
To do this, we upskill rare patient groups through trainings, guided programmes, community projects and research initiatives.
Patient groups are a lifeline for those living with a rare disease. They provide emotional support and advice for day-to-day living.
We are here to help those groups be the best that they can be.
Learn more about our work over on our website: https://t.co/FbdrzPzBw2

[RARE Revolution Magazine® @RareRevolutionM]

We are delighted to launch our newest RARE in Focus all about CAR T-cell therapy (CAR T). We look at the burden of treatment cycling, the lived reality of a CAR T-cell therapy trial, the clinical challenge of getting the right treatment to the right patient and the science, benefit and risks and the questions still to be answered. Read all articles here: https://t.co/cVq8PGpLMc

#CART #CARTCellTherapy #AutoImmune #AutoImmuneNeurology #StiffPersonSyndrome #SPS #MG #MyastheniaGravis

[RARE Revolution Magazine® @RareRevolutionM]

Access shouldn’t hinge on multi-year approvals when safety and efficacy are already established. By starting in Macau manufacturers can deliver paediatric orphan therapies within months, de-risk compliance and validate demand. This piece explains the model, the safeguards and how it scales into Greater China

https://t.co/jrHSu90Kwu

[RARE Revolution Magazine® @RareRevolutionM]

A double entry today as we are taking a trip down memory lane as we celebrate our 10th Birthday this year.

This edition on metabolic conditions was more meaningful than usual for me, as I was given the opportunity to write about my own experiences with rare disease, namely my own condition, cystinosis. I decided to focus on the "healthcare treadmill" that those of us who live with rare diseases and conditions find ourselves on. Over the years I have experienced amazing care, but on the flip side, I have also experienced the opposite. And my story isn't an anomaly, there are many people of all ages in RARE communities who feel unheard at their most vulnerable moments, unable to advocate for themselves. Also in this edition, we take a look into the daily challenges of those living with metabolic conditions and the people who support them. Joe Rumney, creative designer, RARE Revolution

Read the full edition here: https://t.co/Es4HrcAawK

#RR10 #RARERev10 #RARERevolut10n

[RARE Revolution Magazine® @RareRevolutionM]

Caring for a loved one with a genetic condition comes with unique worries, especially the thought of a medical emergency when you aren't by their side to speak for them. 💙
To help you feel more prepared and confident, @MedicAlertUK, @GenePeopleUK and @AJsChallenge Vascular EDS Charity have teamed up for a free virtual event:
"More Than an ID: Emergency Peace of Mind for Parents and Carers"
During this session, we’ll be sharing practical, actionable steps you can take to build a comprehensive emergency toolkit for your loved one. We'll show you how to ensure their critical, complex health information is always ready and accessible for paramedics and emergency services.
📅 When: Thursday 19 November 2026, at 7:00 PM (GMT)
📍 Where: Zoom
Join us to discover how to safeguard your loved one's health and ensure their unique needs are communicated clearly and accurately in any situation.
🔗 Register for your free spot here: https://t.co/BuxeTr3Y3l
🤝 Help us reach those who need it: If you know another parent, carer, or family who would benefit from this session, please share this post to your page or tag them in the comments below. Let's build a safer, more prepared community together.
#MedicAlert #GenePeople #AnnabellesChallenge #CarerSupport #Parenting #GeneticConditions #RareDisease #EmergencyPreparedness #MedicalID

[RARE Revolution Magazine® @RareRevolutionM]

Coming soon. Our newest RARE in Focus, this time we are looking at CAR T-cell therapy (CAR T).

Never miss a launch. Sign up for free here: https://t.co/gMDOBwRLLJ

#CART #CARTCellTherapy #AutoImmune #AutoImmuneNeurology #StiffPersonSyndrome #SPS #MG #MyastheniaGravis

[RARE Revolution Magazine® @RareRevolutionM]

Join us for our upcoming RARE REV-inar exploring an often-overlooked topic: men and mastocytosis. Discover personal stories, expert clinical insights, and conversations around diagnosis, symptom management, and living well.

🗓 Date: 24th November 2026

🕑 Time: 2:00 PM GMT

🔗 Sign up for free here: https://t.co/gFUbdtZmM8

#RARERevolution #Mastocytosis #SystemicMastocytosis #RareDisease #MensHealth #PatientVoice

[RARE Revolution Magazine® @RareRevolutionM]

Big challenges in rare disease are easy to agree on and hard to act on. Find out how we break them down, and what that approach revealed in RareCare, the NIHR-funded evaluation of England's rare disease action plans

https://t.co/Nakb2lSQnL

[RARE Revolution Magazine® @RareRevolutionM]

🚨 Applications Open: RDI Youth Leadership Programme 2027–2028!

Are you a young leader passionate about rare diseases and ready to strengthen your skills, connect with peers from around the world and make a difference in the rare disease community?

🌐 Over 2 years, participants will have the opportunity to develop their leadership skills through mentorship, peer learning, capacity building and practical leadership opportunities, while connecting with other young leaders across the global rare disease community. As part of the Programme, participants will develop their own Leadership Journey, identifying a challenge or opportunity they would like to contribute to and the change they want to help create.

📄 Read the Terms of Reference: https://t.co/Ev8e1655Ao

👉 Apply here: https://t.co/hsn3raYo6t

🚨 Deadline: Sunday, 22 November 2026

Don’t miss the opportunity to grow your leadership, share your perspective and help shape the future of the rare disease community 🤝

The RDI Youth Leadership Programme is supported by Fondation Ipsen, under the aegis of Fondation de France.

#RDIYLP #YouthLeadership #RareDiseases #GlobalHealth #RDI @FondationIpsen

[RARE Revolution Magazine® @RareRevolutionM]

In a volatile market, what can biopharma companies do to fund and prioritise their pipelines? David Crean, chief business officer of MediciNova, shares his guidance on the issue

https://t.co/9jjVikFIM0

[RARE Revolution Magazine® @RareRevolutionM]

Biotechs are uniquely placed to build close, meaningful relationships with patient communities yet not every biotech is ready to engage. The result is a set of predictable engagement gaps. Closing those gaps starts inside the company

https://t.co/UvGszgZ38P

[RARE Revolution Magazine® @RareRevolutionM]

Huge thank you to our sponsors @TravereRare for making this RARE in Focus on classical homocystinuria (HCU) a reality and to all of our contributors for their incredible insights. You can catch up on all the articles here: https://t.co/8fKjKLP5vj

#HCU #ClassicalHomocystinuria #Homocystinuria #LowProtein #RareDisease #RareMetabolic #MetabolicDisorder

[RARE Revolution Magazine® @RareRevolutionM]

In the coming weeks, the World Health Organization (WHO) is expected to publish a Discussion Paper, which will serve as the basis for a public consultation to gather perspectives and recommendations from stakeholders worldwide.

To support meaningful and inclusive participation, Rare Diseases International (RDI) is preparing a coordinated consultation process, bringing together its members, Regional Task Forces, partners, and wider rare disease community.

To introduce this process and explain how you can get involved, RDI will host two information sessions on Tuesday, 10 November:

Session 1: 10am CET | 2:30pm IST | 5pm SGT | Register here: https://t.co/a6fxAXR2u2

Session 2: 4pm CET | 10am EST (con interpretación al español) | Register here: https://t.co/EgWsk0jZ3s

[RARE Revolution Magazine® @RareRevolutionM]

What is classical homocystinuria, what are the symptoms and treatments and who does it affect? Have a look at our handy downloadable infographic for more information on this rare metabolic disorder. Read here: https://t.co/sTPncFxxuD

#HCU #ClassicalHomocystinuria #Homocystinuria #LowProtein #RareDisease #RareMetabolic #MetabolicDisorder