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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

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

By CONTRIBUTOR
18 December 2024

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

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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