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Rare Revolution Magazine
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A day in the life

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

By CONTRIBUTOR
23 October 2024

A day in the life of a PSPA helpline manager

By CONTRIBUTOR
14 October 2024

Drunk or disabled? – challenges with ataxia

By CONTRIBUTOR
16 September 2024

#JosiahStrong: Living with familial cold autoinflammatory syndrome—one year on

By CONTRIBUTOR
14 August 2024

Charity & advocacy

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A milestone moment: The CPA Research Foundation hosts its first in-person retreat

By admin
26 June 2025

A mother’s journey to change the medical landscape for son’s rare disease

By admin
18 June 2025

Fighting for Jackson: A mother’s journey to empower families living with Angelman syndrome

By admin
13 June 2025

The rare disease foundation journey

By admin
11 June 2025

Industry Insights

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NICE’s highly specialised technologies (HST) criteria: a summary and impact analysis

By Sheela Upadhyaya
14 May 2025

How does industry better navigate the challenges in getting innovation into routine practice

By CONTRIBUTOR
9 April 2025

Launching an early access programme: influencing factors

By CONTRIBUTOR
12 March 2025

Patient-led research in rare diseases: How can we make this a reality?

By CONTRIBUTOR
20 February 2025

Letters

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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

“Glass siblings”: an unnecessary label

By CONTRIBUTOR
24 June 2024

Medical

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Climbing in Heels

By admin
19 June 2025

The reclaimed horse (or is it a zebra?): ASCO edition 

By Becky Pender
6 June 2025

Spinal cord stimulation: A new perspective for SMA research

By admin
23 May 2025

Cure the cycle

By Becky Pender
15 May 2025

Patient voice

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“You look different.” 

By admin
4 June 2025

A family’s fight for sleep: the unseen side of Williams syndrome

By CONTRIBUTOR
9 April 2025

Learning to thrive: living with congenital lymphangioma

By CONTRIBUTOR
14 March 2025

The invisible part of me: living with PBC

By Becky Pender
25 February 2025

RARE caregiving

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From isolation to connection: One rare caregiver’s passion to build community

By admin
5 June 2025

The caregiver engine steers accelerated rare cancer trials

By Paul Kidwell
7 May 2025

Rare disease caregiver policy: what, who and when/now

By Paul Kidwell
25 March 2025

Considering caregiver value at JP Morgan

By Paul Kidwell
22 January 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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Calling for implementation of neonatal screening programmes following the WHO resolution on rare diseases

By Becky Pender
28 June 2025

New awards launched to celebrate unsung heroes supporting families living with Dravet Syndrome

By admin
23 June 2025

Animation to aid diagnosis of corticobasal degeneration

By admin
18 June 2025

New research reveals severe psychological distress experienced by families caring for a child with Dravet Syndrome

By admin
18 June 2025

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
25 March 2024

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

By Nicola Miller
14 June 2023

Science & tech

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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

MendelScan—AI for good: informing patient and public perception

By Nicola Miller
7 October 2024

Sunday sessions

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Art in isolation: A journey of healing and resistance

By CONTRIBUTOR
22 June 2025

In His hands

By CONTRIBUTOR
16 March 2025

How reiki, spirituality and faith help me accept life with a rare disease

By CONTRIBUTOR
15 September 2024

Goodness and mercy: my lupus journey

By CONTRIBUTOR
28 April 2024

Turning the tide for rare disease

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Former NFL, University of Kentucky football star, Art Still, working to shine a spotlight on rare heart disease

By CONTRIBUTOR
25 June 2025

A movement born from silence: The global mission to treat CTNNB1 syndrome

By admin
11 June 2025

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 2)

By Becky Pender
26 May 2025

A tapestry of hope, advocacy & community: Day 2 of the NPUK AFC and IW 2025 (Part 1)

By admin
26 May 2025

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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