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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
For George: The MVA Society
By CONTRIBUTOR
20 November 2024
Charity & advocacy
NF1 breast cancer awareness campaign: Andrea’s story
By ebishop
15 October 2024
Charity & advocacy
NF1 breast cancer awareness campaign: Leading NF1 expert Professor Gareth Evans calls for earlier screening
By Becky Pender
15 October 2024
Charity & advocacy
NF1 breast cancer awareness campaign: Caitriona Plunkett empowers young women with NF1 to prioritise breast health
By Becky Pender
15 October 2024
Industry Insights
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Industry Insights
Looking backwards, looking forwards
By CONTRIBUTOR
11 December 2024
Industry Insights
Real-world data in EAPs: makes sense for rare diseases
By CONTRIBUTOR
13 November 2024
Industry Insights
Putting patients first?
By CONTRIBUTOR
2 October 2024
Industry Insights
NICE’s key developments in 2024 in summary
By CONTRIBUTOR
11 September 2024
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
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
Medical
The GLISTEN trial
By CONTRIBUTOR
14 April 2023
Patient voice
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Patient voice
My journey with adrenocortical cancer: from diagnosis to advocacy
By CONTRIBUTOR
6 November 2024
Patient voice
Understanding palliative care
By CONTRIBUTOR
9 October 2024
Patient voice
What is pain?
By CONTRIBUTOR
9 October 2024
Patient voice
My unending search for a diagnosis?
By CONTRIBUTOR
25 September 2024
RARE caregiving
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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 caregiving
The barista and the quiltmaker: life lessons from strangers
By CONTRIBUTOR
5 July 2023
RARE caregiving
Parenting superpower series – stay listening
By CONTRIBUTOR
7 October 2021
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
New study reveals severe lack of support for Dravet Syndrome carers
By admin
3 December 2024
RARE News
DEBRA partners with NHS England to better understand epidermolysis bullosa (EB)
By admin
11 November 2024
RARE News
HBA Support achieves registered charity status
By admin
7 November 2024
RARE News
DREAMS: a year of innovation and progress in the quest for neuromuscular disease therapies
By admin
31 October 2024
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
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
RARE REV-inar
Early access pathways to medicines – insights from a multi-stakeholder discussion
By editor
10 November 2022
Science & tech
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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
Science & tech
Precision in patient data: How genetic databases are helping to shape rare disease population studies
By CONTRIBUTOR
8 May 2024
Science & tech
Beyond development: Overcoming market access challenges for rare disease treatment
By CONTRIBUTOR
28 February 2024
Sunday sessions
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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
Sunday sessions
Relationships can be tricky in a world of rare disease
By CONTRIBUTOR
8 October 2021
Turning the tide for rare disease
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Turning the tide for rare disease
Bridging the gap: differing perceptions of generalised myasthenia disease burden
By CONTRIBUTOR
11 December 2024
Turning the tide for rare disease
Becker muscular dystrophy patients find hope in building a community
By CONTRIBUTOR
4 December 2024
Turning the tide for rare disease
flok, pioneering patient-led research for inherited metabolic disorders (IMD)
By CONTRIBUTOR
3 December 2024
Turning the tide for rare disease
Bridging the gap: health inequalities and rare diseases
By CONTRIBUTOR
29 November 2024
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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