Subscribe Now

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

Latest Edition
RARE Siblings
  • 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

The heart of PPA2: building a global community of hope and advocacy

By CONTRIBUTOR
7 April 2025

Charity & advocacy

Venture philanthropy in rare disease: lessons from the frontlines

By CONTRIBUTOR
2 April 2025

Charity & advocacy

“Lil’ Brave One” from Serbia: Empowering scientific and patient networks in the field of rare neurotransmitter disorders

By CONTRIBUTOR
5 March 2025

Charity & advocacy

Immunocompromised Association kicks off 2025 with safety and fun, with its inaugural virtual New Year’s Eve ball drop+

By admin
14 February 2025

Industry Insights

VIEW MORE >

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

Industry Insights

Looking backwards, looking forwards

By CONTRIBUTOR
11 December 2024

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 value of hope

By CONTRIBUTOR
16 April 2025

Medical

Systemic mastocytosis: A new study reveals the perceptions and realities of this rare mast cell disorder

By CONTRIBUTOR
2 October 2024

Medical

Goal Attainment Scaling: delivering patient-centred clinical trials using personalised outcome measures

By Geoff Case
11 September 2024

Medical

Transitioning successfully from paediatric to adult care in Duchenne muscular dystrophy

By CONTRIBUTOR
6 September 2023

Patient voice

VIEW MORE >

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

Patient voice

“Having SDS shouldn’t hold you back, it shouldn’t define who you are.”

By CONTRIBUTOR
18 December 2024

RARE caregiving

VIEW MORE >

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 caregiving

Challenges of caring for a rare disease patient—a discussion

By Becky Pender
20 November 2024

RARE caregiving

A road less travelled is no less worthy: A RARE mum’s reflections on special needs parenting

By CONTRIBUTOR
21 June 2024

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

Global Collaboration Aims for Consensus on Kabuki Syndrome Clinical Management Guidelines

By Joe Rumney
30 April 2025

RARE News

Sickle Cell Disease Association of America names events manager

By admin
29 April 2025

RARE News

Graeme Souness to swim the English Channel, there and back, to be the difference for EB

By admin
29 April 2025

RARE News

UK charity releases new funding for research into PSP & CBD

By admin
25 April 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

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 editor
25 March 2024

RARE REV-inar

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

By editor
14 June 2023

RARE REV-inar

ANCA-associated vasculitis and its impact on patients and families

By editor
28 March 2023

Science & tech

VIEW MORE >

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 editor
7 October 2024

Science & tech

Improved patient finding strategies for rare diseases – a win-win for patients and drug developers

By CONTRIBUTOR
25 September 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

This isn’t just a day. It’s a Movement. Undiagnosed Day 2025: Why action can’t wait

By admin
29 April 2025

Turning the tide for rare disease

We’re not here for symbolic victories—we’re here for action

By CONTRIBUTOR
2 April 2025

Turning the tide for rare disease

Beyond Rare Disease Day—Improving quality of life for people living with HAE

By CONTRIBUTOR
26 March 2025

Turning the tide for rare disease

The power of the patient voice in rare disease research

By CONTRIBUTOR
12 March 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