RARE Revolution Magazine

RARE Revolution Magazine The only digital magazine giving a voice to patients affected by rare conditions RARE Revolution Magazine® is published by RARE Revolution Publishing Ltd.

RARE Revolution Magazine® is a FREE, quarterly digital magazine for the Rare disease community and those wishing to learn more and be inspired by their stories. It seeks to give RARE patients and the charities that represent them a voice to be heard on their terms, while providing useful tips, guidance, features and current news. Queries: [email protected]

Editorial/features: [email protected]

Advertising:
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Huge thank you to our sponsors Childhood Tumour Trust for making this RARE in Focus a reality and to all of our contribu...
09/18/2026

Huge thank you to our sponsors Childhood Tumour Trust for making this RARE in Focus a reality and to all of our contributors for their incredible insights. You can catch up on all the articles here: https://rarerevolutionmagazine.com/digital_spotlights/nf1/

Childhood Tumour Trust

Consultant paediatrician and rare disease parent, Dr Ellie Day, reflects on why collaboration with patient charities, su...
09/18/2026

Consultant paediatrician and rare disease parent, Dr Ellie Day, reflects on why collaboration with patient charities, such as Childhood Tumour Trust (CTT), are pivotal to advocating for better care. For a condition with stark variations in healthcare services across the UK, CTT works hard to provide valuable resources to aid earlier diagnosis, understanding and management of this complex condition and improve national standards of care. Read here:
https://rarerevolutionmagazine.com/digitalspotlight/building-better-nf1-pathways-together/
Childhood Tumour Trust

We are taking a trip down memory lane as we celebrate our 10th Birthday this year. This front cover features a beautiful...
09/18/2026

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

This front cover features a beautiful hand-drawn illustration from 18-year-old Zoe Burr, a coloured-pencil artist based in the UK. Zoe has a sister with a rare genetic condition and cerebral palsy so rare disease is close to her heart. This cover is a departure from our usual photographic front covers of individuals featured in the magazine, but felt fitting for this newborn screening edition. It serves to represent all babies, the world over, who, regardless of geography, deserve the best possible start in life and every opportunity to fulfil their potential. Emma Bishop, associate editorial and design, RARE Revolution

Read the full edition here: https://bit.ly/RR-SpecialEd012-NewbornScreening

BE YOUR OWN COVER STORY AND CELEBRATE 10 YEARS WITH US! 🎉Over the last decade, many inspiring people from rare disease c...
09/17/2026

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 and remember to use the hashtag 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://canva.link/eucxo0bp77rtfr4

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 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 rarerevolutionmagazine.com

As a condition predominantly seen as a “tumour condition” some of the lesser recognised symptoms and complications of ne...
09/17/2026

As a condition predominantly seen as a “tumour condition” some of the lesser recognised symptoms and complications of neurofibromatosis type 1 (NF1) are often missed and not adequately addressed. GP and NF1 parent, Dr Sheelagh Harwell, explores some of these manifestations, from missed malignancy risks and unmanaged hypertension to psychological strain. She advocates for registries, national standardised guidelines and clear care pathways to ensure fair, joined-up care is delivered. Read here: https://rarerevolutionmagazine.com/digitalspotlight/more-than-tumours-addressing-the-complex-manifestations-of-nf1/
Childhood Tumour Trust

Working across borders, Fesca - Federation of European Scleroderma Associations is leveraging alliances, data and patien...
09/16/2026

Working across borders, Fesca - Federation of European Scleroderma Associations is leveraging alliances, data and patient leadership to tackle entrenched disparities in care and access to treatments. FESCA, president, Sue Farrington and vice-president, Ilaria Galetti, share how a united European voice is reshaping scleroderma advocacy. Read here: https://rarerevolutionmagazine.com/stronger/

Three time BAFTA award winning actress and producer, Rakie Ayola, became patron of the Childhood Tumour Trust, when her ...
09/16/2026

Three time BAFTA award winning actress and producer, Rakie Ayola, became patron of the Childhood Tumour Trust, when her eldest daughter was diagnosed with neurofibromatosis type 1 (NF1). Using her public profile and mother’s insight, she is dedicated to raising much needed awareness and understanding of this complex rare condition, and highlights the power and importance of community. Read here: https://rarerevolutionmagazine.com/digitalspotlight/raising-the-profile-of-nf1-and-advocating-for-medical-curiosity/


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