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Rare Revolution Magazine
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A day in the life

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The weight of stillness – a journey with dystonia: a first journal entry

By CONTRIBUTOR
1 April 2026

A day in the life: reconciling grief and gratitude

By CONTRIBUTOR
17 December 2025

A day in the life: Vicky, Mum to Tiger-Lily

By CONTRIBUTOR
3 December 2025

A Day in the Life: living with sickle cell anaemia-Naomi’s story

By CONTRIBUTOR
23 October 2024

Charity & advocacy

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Why microcephaly must be included in global rare disease agendas: Africa’s perspective

By CONTRIBUTOR
23 March 2026

Awareness to innovation: Sophie’s Hope Foundation paves the way for GSD1b research

By CONTRIBUTOR
21 January 2026

Fahr better to know

By CONTRIBUTOR
7 January 2026

From silence to support: the journey of CS ECHO and Cowden syndrome

By CONTRIBUTOR
10 December 2025

Industry Insights

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How can AI amplify patient voices to improve rare disease communications?

By CONTRIBUTOR
24 February 2026

A tough year

By Nicola Redfern
10 December 2025

Reasons to be cheerful?

By Nicola Redfern
13 August 2025

Expanding appreciation for the patient journey

By CONTRIBUTOR
16 July 2025

Letters

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Without FDA flexibility for rare diseases our daughter’s future is at risk

By CONTRIBUTOR
8 December 2025

The math is anything but encouraging

By CONTRIBUTOR
12 September 2024

A troubling development in access to treatment for people living with primary biliary cholangitis (PBC)

By CONTRIBUTOR
7 August 2024

Sarcoma Awareness Month: Sarcomas demand urgent awareness and education to prevent poor outcomes

By CONTRIBUTOR
24 July 2024

Medical

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From whimsy to wisdom

By CONTRIBUTOR
16 March 2026

When medicine lags: how US healthcare falls behind, what it costs us and how to fix it

By CONTRIBUTOR
14 January 2026

Lessons we can all learn from my first, and only, patient to date with idiopathic multicentric Castleman’s disease (iMCD)

By CONTRIBUTOR
12 November 2025

Climbing in Heels

By admin
19 June 2025

Patient voice

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A paw-sitive diagnosis: how our rescue dog, Nash, helped my daughter embrace her rare disease

By CONTRIBUTOR
27 March 2026

Why mental health is a core part of the rare disease experience: listening to the patient voice

By CONTRIBUTOR
11 March 2026

Two paths, one childhood: raising twins when one has a rare muscular dystrophy

By CONTRIBUTOR
11 March 2026

The journey, not the destination

By CONTRIBUTOR
4 March 2026

RARE caregiving

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Rise up and leave an impact, despite the pain

By CONTRIBUTOR
2 February 2026

Silent and unseen. Mental health and the rare disease caregiver

By Paul Kidwell
12 November 2025

Rare diseases become “not-so-rare” within a global R&D and treatment strategy

By Paul Kidwell
10 September 2025

Science side-by-side

By Paul Kidwell
9 July 2025

RARE employment

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My year at RARE Youth Revolution

By CONTRIBUTOR
26 January 2022

Realising our workplace vision

By CONTRIBUTOR
6 October 2021

RARE Employment Q&A with Police Inspector David Singleton

By CONTRIBUTOR
6 October 2021

Professional careers and rare disease – finding a balance that works

By CONTRIBUTOR
6 October 2021

RARE News

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Life’s a Polyp Foundation celebrates grand launch for Colorectal Cancer Awareness Month

By admin
23 March 2026

Evelina London Children’s Hospital joins the INPDR Clinician Reported Database

By admin
6 March 2026

5th International Scientific Congress on Spinal Muscular Atrophy (SMA)

By admin
2 March 2026

OpalMedica launches patient platform to help shape the future of rare disease detection 

By admin
28 February 2026

RARE Ramblings

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Richard’s RARE Ramblings: Winter is coming… and I am ecstatic!

By CONTRIBUTOR
13 December 2023

Richard’s RARE Ramblings: accommodating for rare conditions

By CONTRIBUTOR
9 August 2023

Richard’s RARE Ramblings: Why?

By CONTRIBUTOR
12 April 2023

Richard’s RARE Ramblings: FEAR!

By CONTRIBUTOR
8 February 2023

RARE REV-inar

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One degree of separation from NF1

By admin
15 May 2025

A blueprint to advance genomic medicine in Latin America

By CONTRIBUTOR
29 January 2025

Eight challenges in developing rare disease therapies

By Nicola Miller, RARE Revolution
25 March 2024

Gene therapies: a new age of care in rare diseases?

By Nicola Miller, RARE Revolution
14 June 2023

Science & tech

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“The Great Democratisation”. How AI is levelling the playing field for patients

By CONTRIBUTOR
18 February 2026

Three ways AI is changing paediatric genomic medicine

By admin
9 June 2025

The inflection era of healthcare: where technology, data, AI, and collaboration converge

By CONTRIBUTOR
24 February 2025

Enhancing clinical trial success through proactive patient advocacy and engagement

By CONTRIBUTOR
19 February 2025

Sunday sessions

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An inventor’s carol for Rare Disease Day

By CONTRIBUTOR
8 February 2026

Drought-tolerant faith

By CONTRIBUTOR
25 January 2026

Art in isolation: A journey of healing and resistance

By CONTRIBUTOR
22 June 2025

In His hands

By CONTRIBUTOR
16 March 2025

Turning the tide for rare disease

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Making it easier for patients living with rare diseases to find the right specialist

By CONTRIBUTOR
25 March 2026

The inflection point for rare diseases – driving a new era of co-created innovation

By CONTRIBUTOR
27 February 2026

From no options to new hope: How science, partnership and persistence are driving progress towards treatments for CASK

By CONTRIBUTOR
26 February 2026

How evidence and patient realities can help us to rethink the future of MG care

By CONTRIBUTOR
25 February 2026

Weblinks and references

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Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES

By admin
13 October 2021

References and signposting weblinks for: RARE Patient Partners edition 014

By admin
11 January 2021

Signposting weblinks for: Mental Health special issue 012(S)

By admin
10 April 2019

References and signposting weblinks for: RARE Patient Partners edition 014

By admin
10 January 2019
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