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A day in the life

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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

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Charity & advocacy

NF1 One degree of separation campaign: Interactive body map

By admin
15 May 2025

Charity & advocacy

Celebrating the incredible work of nurses for International Nurses Day

By CONTRIBUTOR
12 May 2025

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

Industry Insights

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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

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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

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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

Medical

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

By CONTRIBUTOR
2 October 2024

Patient voice

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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

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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 caregiving

Challenges of caring for a rare disease patient—a discussion

By admin
20 November 2024

RARE employment

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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

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RARE News

Sickle Cell Disease Association of America names membership manager

By admin
21 May 2025

RARE News

NHL All-Star Troy Terry and wife Dani to host CureDuchenne golf shootout on September 12–13, continuing a legacy of impact for Duchenne muscular dystrophy

By admin
21 May 2025

RARE News

RARE Revolution expands its legacy with the launch of RARE Revolution insider

By admin
19 May 2025

RARE News

Turning hope into action: The story of Happy Heart Week and a new era for Barth Syndrome

By admin
16 May 2025

RARE Ramblings

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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

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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 editor
25 March 2024

RARE REV-inar

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

By editor
14 June 2023

Science & tech

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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

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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

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Turning the tide for rare disease

Life wants me here!

By admin
9 May 2025

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

Weblinks and references

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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
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