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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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11/06/2026

📢 Join us for our 27th RARE REV-inar: Living with Systemic Mastocytosis!

We are excited to bring you the second in our 2026 series of webinars dedicated to this topic. Join us for a powerful, conversational discussion as we delve into the realities of life with Systemic Mastocytosis.

🗓 Date: 26th June 2026

🕑 Time: 2pm BST

🔗 Sign up for free here: https://bit.ly/Mastocytosis-REV-inar2

We look forward to seeing you there!

Primary sclerosing cholangitis (PSC) is a rare liver disease that often strikes people in the “rush hour” of life, with ...
11/06/2026

Primary sclerosing cholangitis (PSC) is a rare liver disease that often strikes people in the “rush hour” of life, with no approved medical cure. Italian hepatologist Dr Laura Cristoferi, PhD, shares an HCP’s perspective on the unmet needs in PSC—from unreliable biomarkers and poorly controlled symptoms, to transplant relapse and psychological burden, and explains how AI-driven imaging, international collaboration and patient-powered research are slowly reshaping the future. Read here: https://rarerevolutionmagazine.com/digitalspotlight/fire-fuel-and-frustration-hcp-perspective-on-the-unmet-needs-for-primary-sclerosing-cholangitis-psc/

AML moves fast, and so does the need to understand your options.Acute Myeloid Leukemia is a blood cancer that starts in ...
11/06/2026

AML moves fast, and so does the need to understand your options.

Acute Myeloid Leukemia is a blood cancer that starts in the bone marrow, and early symptoms can often feel vague and easy to miss.

Treatment is not the same for everyone, and there are often different paths depending on your condition and your body.

There are clinical trials for AML available on Trialport for people who want to explore what’s possible.

These studies are sponsored, with costs covered and logistics managed by research teams, helping reduce barriers to participation.

trialport exists to help make these options easier to find and understand, so people can navigate what’s ahead with more clarity and support.

If helpful, you can explore AML clinical trials on https://go.prxengage.com/r/hTuiGQLkgs

We're thrilled to welcome Karen Roberts into the RARE Rev team as writer and digital editor. Karen has gained 20 years o...
10/06/2026

We're thrilled to welcome Karen Roberts into the RARE Rev team as writer and digital editor.

Karen has gained 20 years of experience in the media industry, working as a journalist for regional and national titles, and as a freelancer in media relations and communications.

When she's not working, you'll find her writing poetry or being a taxi service to her two children. We can't wait to see what Karen brings in the exciting new chapter.

Meet our awesome team at rarerevolutionmagazine.com/rare-revolutionaries/meet-the-team

When statistician Brian Thorsen was told he had “five to ten years,” it set him on a path that would transform his life....
10/06/2026

When statistician Brian Thorsen was told he had “five to ten years,” it set him on a path that would transform his life. Now, Brian, patient registry director at PSC Partners Seeking a Cure and executive director, Audra Fleming, unpack the visible and invisible toll of primary sclerosing cholangitis—from crushing fatigue and chronic itch to career loss and caregiver grief. Read here: https://rarerevolutionmagazine.com/digitalspotlight/life-with-psc-the-visible-and-invisible-toll/

Growing up with negative experiences of healthcare and discouraged from openly sharing her health issues, today Connie L...
10/06/2026

Growing up with negative experiences of healthcare and discouraged from openly sharing her health issues, today Connie Lee Montgomery shares her story on national and international stages and uses her voice to effect meaningful change, especially for underrepresented communities. Read more here: https://rarerevolutionmagazine.com/one-voice-reaches-rare-everywhere/

Based in Hampshire, The Muscle Help Foundation (MHF) charity has announced that it is expanding eligibility for its serv...
05/06/2026

Based in Hampshire, The Muscle Help Foundation (MHF) charity has announced that it is expanding eligibility for its services, increasing the upper age limit from 28yrs to 35yrs. This change enables adults living with muscular dystrophy (MD) to access the charity’s fully funded and accessible Muscle Dream experiences. Read more here: https://rarerevolutionmagazine.com/age-eligibility-extended-to-35yrs-by-uks-leading-experiential-muscular-dystrophy-md-charity/
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