Subscribe Now

By entering these details you are signing up to receive our newsletter.

Latest Edition
Rare Revolution Magazine
  • To use more accessibility options, please use a different browser such as Chrome or Firefox.

A day in the life

VIEW MORE >

A day in the life

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

By CONTRIBUTOR
23 October 2024

A day in the life

A day in the life of a PSPA helpline manager

By CONTRIBUTOR
14 October 2024

A day in the life

Drunk or disabled? – challenges with ataxia

By CONTRIBUTOR
16 September 2024

A day in the life

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

By CONTRIBUTOR
14 August 2024

Charity & advocacy

VIEW MORE >

Charity & advocacy

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

By admin
18 June 2025

Charity & advocacy

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

By admin
13 June 2025

Charity & advocacy

The rare disease foundation journey

By admin
11 June 2025

Charity & advocacy

Building a global patient registry for a rare disease: The story of the INPDR

By admin
2 June 2025

Industry Insights

VIEW MORE >

Industry Insights

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

By admin
14 May 2025

Industry Insights

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

By CONTRIBUTOR
9 April 2025

Industry Insights

Launching an early access programme: influencing factors

By CONTRIBUTOR
12 March 2025

Industry Insights

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

By CONTRIBUTOR
20 February 2025

Letters

VIEW MORE >

Letters

The math is anything but encouraging

By CONTRIBUTOR
12 September 2024

Letters

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

By CONTRIBUTOR
7 August 2024

Letters

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

By CONTRIBUTOR
24 July 2024

Letters

“Glass siblings”: an unnecessary label

By CONTRIBUTOR
24 June 2024

Medical

VIEW MORE >

Medical

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

By Becky Pender
6 June 2025

Medical

Spinal cord stimulation: A new perspective for SMA research

By admin
23 May 2025

Medical

Cure the cycle

By Becky Pender
15 May 2025

Medical

The value of hope

By CONTRIBUTOR
16 April 2025

Patient voice

VIEW MORE >

Patient voice

“You look different.” 

By admin
4 June 2025

Patient voice

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

By CONTRIBUTOR
9 April 2025

Patient voice

Learning to thrive: living with congenital lymphangioma

By CONTRIBUTOR
14 March 2025

Patient voice

The invisible part of me: living with PBC

By Becky Pender
25 February 2025

RARE caregiving

VIEW MORE >

RARE caregiving

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

By admin
5 June 2025

RARE caregiving

The caregiver engine steers accelerated rare cancer trials

By admin
7 May 2025

RARE caregiving

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

By CONTRIBUTOR
25 March 2025

RARE caregiving

Considering caregiver value at JP Morgan

By CONTRIBUTOR
22 January 2025

RARE employment

VIEW MORE >

A day in the life

My year at RARE Youth Revolution

By CONTRIBUTOR
26 January 2022

A day in the life

Realising our workplace vision

By CONTRIBUTOR
6 October 2021

A day in the life

RARE Employment Q&A with Police Inspector David Singleton

By CONTRIBUTOR
6 October 2021

A day in the life

Professional careers and rare disease – finding a balance that works

By CONTRIBUTOR
6 October 2021

RARE News

VIEW MORE >

RARE News

Animation to aid diagnosis of corticobasal degeneration

By admin
18 June 2025

RARE News

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

By admin
18 June 2025

RARE News

NephCure celebrates inaugural FSGS Awareness Day on June 10, 2025

By admin
29 May 2025

RARE News

CureDuchenne Ventures invests in Entos Pharmaceuticals for development of a redosable, full-length dystrophin gene therapy

By admin
29 May 2025

RARE Ramblings

VIEW MORE >

RARE Ramblings

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

By CONTRIBUTOR
13 December 2023

RARE Ramblings

Richard’s RARE Ramblings: accommodating for rare conditions

By CONTRIBUTOR
9 August 2023

RARE Ramblings

Richard’s RARE Ramblings: Why?

By CONTRIBUTOR
12 April 2023

RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By CONTRIBUTOR
8 February 2023

RARE REV-inar

VIEW MORE >

RARE REV-inar

One degree of separation from NF1

By admin
15 May 2025

RARE REV-inar

A blueprint to advance genomic medicine in Latin America

By CONTRIBUTOR
29 January 2025

RARE REV-inar

Eight challenges in developing rare disease therapies

By Nicola Miller
25 March 2024

RARE REV-inar

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

By Nicola Miller
14 June 2023

Science & tech

VIEW MORE >

Science & tech

Three ways AI is changing paediatric genomic medicine

By admin
9 June 2025

Science & tech

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

By CONTRIBUTOR
24 February 2025

Science & tech

Enhancing clinical trial success through proactive patient advocacy and engagement

By CONTRIBUTOR
19 February 2025

Science & tech

MendelScan—AI for good: informing patient and public perception

By Nicola Miller
7 October 2024

Sunday sessions

VIEW MORE >

Sunday sessions

In His hands

By CONTRIBUTOR
16 March 2025

Sunday sessions

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

By CONTRIBUTOR
15 September 2024

Sunday sessions

Goodness and mercy: my lupus journey

By CONTRIBUTOR
28 April 2024

Sunday sessions

Buddhism, yoga and meditation: how Dee Cowburn is following the path to mindfulness to guide her through life’s darker times

By CONTRIBUTOR
8 October 2021

Turning the tide for rare disease

VIEW MORE >

Turning the tide for rare disease

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

By admin
11 June 2025

Turning the tide for rare disease

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

By Becky Pender
26 May 2025

Turning the tide for rare disease

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

By admin
26 May 2025

Turning the tide for rare disease

Highlighting breakthroughs and collaboration: The NPUK Annual Family Conference & Interactive Workshop 2025

By admin
26 May 2025

Weblinks and references

VIEW MORE >

Weblinks and references

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

By admin
13 October 2021

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By admin
11 January 2021

Weblinks and references

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

By admin
10 April 2019

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By admin
10 January 2019
Skip to content