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 NRG Collective.

RARE Revolution 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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Welcome back to another of our Charity Partner spotlights! This time, we're highlighting Annabelle's Challenge.Annabelle...
07/25/2025

Welcome back to another of our Charity Partner spotlights! This time, we're highlighting Annabelle's Challenge.

Annabelle's Challenge is a charity dedicated to supporting those living with vascular Ehlers-Danlos Syndrome (vascular EDS). It was founded in 2023 by Jared and Sarah Griffin after their daughter, Anabelle, was the youngest person in the UK to be diagnosed with the condition.

Find out more about their story and how to donate at annabelleschallenge.org

Calling all cyclists! Keep Me Breathing has some spaces spare for the London to Brighton Cycle Ride on 14th September! I...
07/25/2025

Calling all cyclists! Keep Me Breathing has some spaces spare for the London to Brighton Cycle Ride on 14th September!

It’s only 55 miles & you’ll be peddling for a great cause! KMB is working hard to develop their new treatment for children with Congenital Central Hypoventilation Syndrome (CCHS) - a condition that causes them to stop breathing every time they go to sleep.

If you can join Team KMB please email [email protected] to find out more or to sign up!

Beacon is seeking new Trustees! 📢They're looking for at least two new Trustees to help shape Beacon’s future and enhance...
07/25/2025

Beacon is seeking new Trustees! 📢
They're looking for at least two new Trustees to help shape Beacon’s future and enhance their support for individuals and families living with rare conditions.
As they enter an exciting new chapter under the leadership of their new Chair, they’re looking for individuals who can bring fresh perspectives and valuable expertise to their board.
Could you be who they're looking for? 👋
They’re particularly keen to hear from individuals with:
👤 Lived experience of a rare disease or of patient group leadership, to help ensure their work remains grounded in the real needs of their community and to guide patient-centred decision-making.
👤 Financial expertise, to review and advise on their financial reporting, oversight, and strategic financial planning.
👤 Fundraising and investment experience, especially someone able to bring help Beacon broaden its network and build long-term relationships with funders keen to support the charity on a sustainable basis.
📝 Find out more about the role: https://ow.ly/UrKS50WrIAL
How to apply:
Send your CV and a short cover letter outlining your interest and relevant experience to [email protected].
Deadline for applications = 4th August 2025 📅

We're sharing our advice for navigating finance following a and ways that will help to make the whole process easier a...
07/25/2025

We're sharing our advice for navigating finance following a and ways that will help to make the whole process easier and less stressful.

Check out our other RARE resources over on our website at rarerevolutionmagazine.com/downloads

Here's a behind-the-scenes look at our annual strategy week, where coffee was always on the agenda! Become a part of the...
07/24/2025

Here's a behind-the-scenes look at our annual strategy week, where coffee was always on the agenda!

Become a part of the RARE Revolution conversation! We're always looking to hear stories from people who have lived experiences with rare diseases and conditions.

Contact us today at [email protected] and let us amplify your story.

🚼 Registration is now open for the 2025 Newborn Screening Bootcamp, a virtual event co-hosted by the EveryLife Foundatio...
07/24/2025

🚼 Registration is now open for the 2025 Newborn Screening Bootcamp, a virtual event co-hosted by the EveryLife Foundation and Expecting Health
On September 17, 2025, join advocates, experts, and federal agency partners to learn about the latest developments in newborn screening.
Who can participate? Anyone interested in learning more about newborn screening is welcome to attend.
🔗 Register here: https://bit.ly/46FsVCo

It's World Sjögren’s Disease Awareness Day.Sjögren’s is a rare autoimmune condition that can cause dry eyes, a dry mouth...
07/23/2025

It's World Sjögren’s Disease Awareness Day.

Sjögren’s is a rare autoimmune condition that can cause dry eyes, a dry mouth, aching muscles and joints, and extreme tiredness.

To read more about Sjögren’s, visit https://bit.ly/4nJ0xFE

Accurately estimating how many people are at risk of rare genetic conditions is challenging, as these conditions are oft...
07/23/2025

Accurately estimating how many people are at risk of rare genetic conditions is challenging, as these conditions are often misdiagnosed or undiagnosed.

The increasing scope and availability of large-scale genetic databases offers a new solution to determining accurate rare disease patient population size numbers – a vital step in better understanding these conditions to support rare disease R&D, strategic planning, and patient advocacy programmes.

HealthLumen is hosting a live demo of AlleleAtlas, our free online tool that enables accurate population-level prevalence estimates for rare genetic diseases to be rapidly generated, leveraging data from gnomAD, the Genome Aggregation Database.


📅 Date: 24 July
🕓 Time: 8am PT / 11am ET / 4pm BST / 5pm CEST
📍 Online

The session will be hosted by Dr James Cook, Lead Genetic Epidemiologist at HealthLumen – and will include a live Q&A session to help you understand how you can get the most out of AlleleAtlas for your rare disease of interest.

You can register for the session here: https://bit.ly/AlleleAtlas

2nd MENA Congress for Neurogenetic Disorders 2025 will take place on 17-18 October 2025 at Dubai, United Arab Emirates.T...
07/23/2025

2nd MENA Congress for Neurogenetic Disorders 2025 will take place on 17-18 October 2025 at Dubai, United Arab Emirates.

This Congress will be the largest regional event dedicated to neurogenetic disorders. The upcoming meeting will feature over 30 expert speakers Including international experts engaging in thought-provoking discussions and exploring innovative approaches to the diagnosis, treatment, and management of a wide range of neurogenetic conditions. Key topics will include genetic epilepsies, neurodegenerative and white matter disorders, movement disorders, neurometabolic diseases, neurodevelopmental disorders, neuromuscular diseases, as well as updates in diagnostics and advancements in therapeutics.

This conference is designed to serve as a premier platform for acquiring the latest knowledge, sharing clinical and research experiences, fostering professional networks and collaborations, and inspiring innovative research in the field of neurogenetic disorders. Ultimately, it aims to contribute to improved patient care and better health outcomes across the region. For more information and to register, please visit our website: https://neurogenetics.ae/

07/22/2025

Our heartfelt thanks again to Rare Revolution Magazine and for those following along this ! We'd love to stay in touch - Please connect with us on social media! You can also learn more and sign up for our newsletter on our website at https://curectnnb1.org
Ctnnb1 Connect & Cure

07/22/2025

CTNNB1 Awareness Day is in THREE DAYS! On Thursday, the 25th, will you join us in raising awareness for this rare disease? Awareness days offer a great opportunity fight against rare together with other patient groups. We would love to see other organizations share CTNNB1 posts this week! For more ways to help, check out https://curectnnb1.org/ctnnb1-awareness-day/
Ctnnb1 Connect & Cure

07/22/2025

Our dragonflies are our WHY! As we fight for them, we are constantly encouraged by their adaptability, fuelling our hope for a better future. Also, this may be a little biased, but they are SO CUTE! Check out the faces and stories of our dragonflies at https://curectnnb1.org/community/meet-our-dragonflies/
Ctnnb1 Connect & Cure

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