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A day in the life

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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

A day in the life

If you’re not dancing, something is wrong…

By CONTRIBUTOR
1 May 2024

A day in the life

A day in the life: living with dyskeratosis congenita (DC)—Paula’s story

By CONTRIBUTOR
19 April 2024

Charity & advocacy

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Charity & advocacy

Join the movement: championing care for rare musculoskeletal conditions

By CONTRIBUTOR
9 October 2024

Charity & advocacy

Haemochromatosis UK helps thousands with life-threatening genetic condition to be diagnosed through postal health kits

By CONTRIBUTOR
18 September 2024

Charity & advocacy

Alex TLC Monthly Research Summaries

By CONTRIBUTOR
12 September 2024

Charity & advocacy

Hope on the horizon: celebrating two years of Hereditary Brain Aneurysm Support and a bright future ahead

By CONTRIBUTOR
10 September 2024

Industry Insights

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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

Industry Insights

Cell and gene therapies: Where are we now?

By CONTRIBUTOR
31 July 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

What is pain?

By CONTRIBUTOR
9 October 2024

Patient voice

Understanding palliative care

By CONTRIBUTOR
9 October 2024

Patient voice

My unending search for a diagnosis?

By CONTRIBUTOR
25 September 2024

Patient voice

Find the power in you

By CONTRIBUTOR
4 September 2024

RARE caregiving

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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 caregiving

Every day is a gift: interview with Dr Al Freedman RARE dad and counselling psychologist

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

Dravet Syndrome UK awarded major funding boost to accelerate research into Dravet Syndrome

By CONTRIBUTOR
9 October 2024

RARE News

CMT Research Foundation surpasses $10 Million goal of ENDGAME Capital Campaign

By admin
1 October 2024

RARE News

Sickle Cell Disease Association of America Inc. holds convention in Atlanta

By admin
1 October 2024

RARE News

PSPA invites applications for small research projects looking into PSP & CBD

By admin
24 September 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

Research into diagnostic tests celebrated at international conference

By CONTRIBUTOR
9 October 2024

Turning the tide for rare disease

Sickle cell disease: The urgent need for better care, increased research funding and better treatment options

By CONTRIBUTOR
8 September 2024

Turning the tide for rare disease

Rare Patient Voice: Helping patients and caregivers share their voices

By CONTRIBUTOR
28 August 2024

Turning the tide for rare disease

I am Celine Dion: The stiff person syndrome community reacts to the release of Dion’s documentary

By CONTRIBUTOR
22 July 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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