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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

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

Industry Insights

How ‘do’ we versus how ‘should’ we think about disease awareness activities?

By CONTRIBUTOR
30 August 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

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

Turning the tide for rare disease

Rare disease—self-advocacy and getting needs met!

By CONTRIBUTOR
28 November 2024

Turning the tide for rare disease

Access to spinal muscular atrophy (SMA) treatment in Denmark: a success story of how persistence can win in the end

By CONTRIBUTOR
15 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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