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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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