RARE Revolution Magazine®

Digital magazine giving a voice to those affected by rare conditions and the charities that support them.

Contact us: [email protected]

[RARE Revolution Magazine® @RareRevolutionM]

🌍💙 Today is International CCHS Day. CCHS is a rare genetic condition affecting automatic breathing especially during sleep. Children and adults need breathing support every night. At Keep Me Breathing, we’re working for a brighter future. 🫁 #WorldCCHSDay #KeepMeBreathing #CCHS
@keepmebreathtwt

[RARE Revolution Magazine® @RareRevolutionM]

We are delighted to launch our newest RARE in Focus all about neurofibromatosis type 1(NF1). Huge thank you to our sponsors Childhood Tumour Trust who celebrate their 10th anniversary as a charity in 2026. Dive in to hear from Kirsten Samuel, Sheelagh Harwell, Ellie Day and Rakie Ayola.

Read all articles here: https://t.co/xxF26rguqX

#NF1 #MyWhy #CTT #NeurofibromatosisType1 #Neurofibromatosis #RAREinFocus
@TrustTumour

[RARE Revolution Magazine® @RareRevolutionM]

As the UK life sciences sector navigates shifting investment priorities and increasing pressure to deliver innovation efficiently, Aberdeen is stepping into the spotlight. Often overshadowed by its energy legacy, the city is also home to a thriving life sciences ecosystem, built on decades of world-class research at the University of Aberdeen and a collaborative, cross-sector approach that’s gaining wider recognition

https://t.co/9uPfmHJtp8

[RARE Revolution Magazine® @RareRevolutionM]

We are taking a trip down memory lane as we celebrate our 10th Birthday this year.

Our RARE Ophthalmology edition front cover features a striking image of Dave Steele, The BLind Poet, a singer -songwriter empowering an entire community through poetry. Dave lives with retinitis pigmentosa (RP) and gives a voice to the experience of slowly going blind through is beautifully penned volumes "Stand by Me RP"

Read the full edition here: https://t.co/U4RpRskEPU

#RR10 #RARERev10 #RARERevolut10n

[RARE Revolution Magazine® @RareRevolutionM]

What is Immune Thrombocytopenia (ITP)?

Check out our downloadable infographic that looks at the signs, symptoms and different types of ITP as well as diagnosis and treatment. Read here: https://t.co/ME1Lz2xU8O

#ITP #ImmuneThrombocytopenia #GlobalITPAwarenessWeek #LightUp4ITP #Global4ITP #Purple4Platelets #ITPAwareness

@O_Cyto
@ITPSupportAssoc

[RARE Revolution Magazine® @RareRevolutionM]

Kingston and Danielle are turning the tide for rare disease. 🌊🦓💙

"We both live with OTC Deficiency, a rare genetic urea cycle disorder that prevents our bodies from properly removing ammonia from the blood. By sharing our story and our journey, we hope to bring greater awareness, understanding, and hope to the rare disease community.

Here’s to making RARE seen, heard, and understood."

#RARERevolution10Years #OTCDeficiency #UreaCycleDisorder #RareDiseaseAwareness #TurningTheTideForRareDisease

[RARE Revolution Magazine® @RareRevolutionM]

There's still time to join our 60 Seconds of RARE anniversary campaign!

To celebrate our tenth anniversary, we're creating a video montage of as many people as possible.

All you need to do is record a short portrait video (about a minute long) speaking about the impact RARE Revolution has had on you and/or those around you.

Please allow a small pause between each answer – you don’t need to read out the question, as all of these videos will be edited, collated and branded.

Here are the questions to answer:
1. Ripple effects - Has RARE Revolution Magazine led to anything exciting and/or helped you in your rare disease journey?
2. Future of RARE - What are your hopes for the future?
3. RARE Inspiration - Who or what inspires you in the rare disease community?
Text the videos via WhatsApp to [phone] or send via email/WeTransfer to [email protected]

Submitting a video does not always guarantee publication as per our T&Cs.

[RARE Revolution Magazine® @RareRevolutionM]

The smartest rare disease professionals aren’t working harder. They’re working with a second brain.

We’ve spent the last few weeks talking about how Cognito saves time on specific tasks, like drafting reports, collating research, or preparing presentations.

But the most impactful shift happens when you stop viewing Cognito as a "project tool" and start using it as your professional operating standard.

If you are ready to stop managing the information and start leading the strategy, it is time to integrate Cognito into your daily workflow.

Discover how Cognito gets straight to what matters: https://t.co/cbq0Yx5F0I

[RARE Revolution Magazine® @RareRevolutionM]

Immune thrombocytopenia (ITP) is widely understood as a bleeding disorder defined by low platelets. For the people who live with it, that definition is incomplete. Fatigue, cognitive symptoms, anxiety and the slow erosion of working and family life are often the heavier burdens, and none of them can be read from a blood test. Barbara Lovrencic, president of the Italian ITP patient association AIPIT, explains why care that looks past the count is long overdue.
Read here: https://t.co/vMujpoBq6t

#ITP #ImmuneThrombocytopenia #GlobalITPAwarenessWeek #LightUp4ITP #Global4ITP #Purple4Platelets #ITPAwareness

@O_Cyto
@ITPSupportAssoc

[RARE Revolution Magazine® @RareRevolutionM]

Get involved in @rarebeacon's Rare Insights Study!

Beacon is conducting a groundbreaking new study to capture, for the first time, the value, impact and challenges of rare disease patient groups across the UK.

So how can you get involved? Take the patient group leader survey to share your experience and expertise on the impact
and challenges rare disease patient groups face.

What’s more, the results will go right back in your hands…
Patient groups who are seeking funding, demonstrating impact or delivering services with limited resources will be able to use the findings from this study’s report to advocate for support.

To find out more about the Rare Insights Study, head over to Beacon’s website: https://t.co/tdDaKHI78K

Respond before 19 th October to make your voice heard!
#RareInsights #PatientGroupLeaderSurvey

[RARE Revolution Magazine® @RareRevolutionM]

Discover how Genie and Rowland’s rare disease journey inspires pioneering autism research. Working alongside Dr Joseph Buxbaum, scientists are advancing potential precision treatments for ADNP syndrome, offering renewed hope for families worldwide. Read here: https://t.co/sVsbfRDk8T

#ADNPSyndrome #RareDisease #AutismResearch #Genetics #PrecisionMedicine #RareDiseaseAwareness

[RARE Revolution Magazine® @RareRevolutionM]

BE YOUR OWN COVER STORY AND CELEBRATE 10 YEARS WITH US! 🎉

Over the last decade, many inspiring people from rare disease communities across the globe have graced our covers. Of course, we really wish we could have included every one of you.

📸 NOW IT’S YOUR TURN! To celebrate our 10th anniversary, we're giving YOU the chance to put yourself on the cover. We’ve created an easy-to-use Canva template so patients, advocates, industry professionals and our supporters can share their story on social media.

To get involved with our special campaign:
1. Open the link below to our template on Canva
2. Add a photo of yourself to the template and download your cover
3. Upload your personalised cover to social media with a short caption about yourself and how you’re turning the tide for rare disease
4. Don’t forget to tag us @RARERevolution and remember to use the hashtag #RARERevolution10Years so we can reshare your post with our audience
5. You can also share your cover and story with us via [email protected] for a chance to be featured in our special anniversary book.

👉 Create your own cover here: https://t.co/9aMBxJIlLo

After you have shared your cover, nominate three other people to get involved too!

DISCLAIMER: This template is provided for individual use to celebrate our 10th anniversary. By sharing your custom cover using the hashtag #RARERevolution10Years or tagging RARE Revolution Magazine, you allow us to reshare your post on our social media channels, website, and anniversary promotional materials. For full T&Cs, visit https://t.co/cL3PNsTmyx

[RARE Revolution Magazine® @RareRevolutionM]

The life sciences sector is expected to experience significant growth over the next decade, but no industry can expand without new talent to support it. Will forecasted job creation in areas such as research and development, laboratory science and programming translate into fresh opportunities for graduates?

https://t.co/Gm8IIJZpIz

[RARE Revolution Magazine® @RareRevolutionM]

Hi, I’m Nisha from Indonesia.

I live with a rare disease called Neurofibromatosis Type 2 (NF2), or NF2-related schwannomatosis.
For me, this condition is not merely a medical diagnosis, it represents a challenging yet deeply meaningful battle for life.

How do I turn the situation around?

I refuse to be a passive victim of my circumstances. Instead, I use my physical limitations as fuel to create social impact through concrete actions:

1. Building the NF2-SWN community and raising public awareness.

2. Supporting fellow rare disease patients in Indonesia.

3. Advocating for the NF2-SWN rare disease community in Indonesia.

The process of living with NF2 is not easy; it starts with self-acceptance, mental strength, and adaptation. I focus on the positive and seek support from those around me. I also undergo therapy and medication to manage my NF2 symptoms.

This process also aims to raise public awareness about the rare disease NF2-SWN and motivate people with NF2-SWN, especially those living with NF2-SWN, to never give up and remain strong in the face of life's challenges.

[RARE Revolution Magazine® @RareRevolutionM]

REN is a trusted partner to neurologists, epileptologists, genetic counselors, APPs, pediatricians, PCPs, nurses & more — CE opportunities, research connections & direct partnership → #tuesdaytakeover https://t.co/c6z0vPXuhe

@RareEpilepsy

[RARE Revolution Magazine® @RareRevolutionM]

Are you an adult with seizures? Care for an adult who has seizures? 📢 In just 3 days join Rare Epilepsies & Adults: Breaking Barriers. Thu Sept 25, 1PM ET. Rare epilepsy resources don't stop at 18 — registration required → #tuesdaytakeover https://t.co/seMF4Uyj61
@RareEpilepsy

[RARE Revolution Magazine® @RareRevolutionM]

Quick poll 🗳️ True or False: REN connects 200+ individual rare epilepsy organizations, each built around a specific diagnosis.
Follow: https://t.co/aGSnohZKBM to see if you are right! #tuesdaytakeover
@RareEpilepsy

[RARE Revolution Magazine® @RareRevolutionM]

Don't see your disorder on REN? We have a home for you too — families to families, families to physicians, founders to founders. Building or leading a patient org? Membership means peer leaders, bootcamps & more → #tuesdaytakeover
@RareEpilepsy

[RARE Revolution Magazine® @RareRevolutionM]

Have seizures but still searching for the cause? A genetic diagnosis can open doors to specialists, treatments, trials & community. Our free guide explains genetic testing in plain language → #tuesdaytakeover #GeneticTesting
@RareEpilepsy

[RARE Revolution Magazine® @RareRevolutionM]

CDKL5→IFCR. SCN1A→Dravet Syndrome Foundation. ATP6V0C→v-ATPase Alliance. SLC13A5 → TESS Research Foundation. REN connects 200+ orgs to the families who need them → #tuesdaytakeover #RareEpilepsy

@RareEpilepsy