A day in the life

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A day in the life

A day in the life: a glimpse into my life living with scleroderma

By admin

15 September 2023

A day in the life

A day in the life: graduation day for Raymond Huml’s son, Jon

By admin

25 July 2023

A day in the life

A day in the life: Josiah’s diagnosis with familial cold autoinflammatory syndrome

By admin

28 June 2023

A day in the life

A day in the life: Cathy Moughton, PSPA helpline care navigator

By admin

24 May 2023

Charity & advocacy

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Charity & advocacy

A Rare Find: upcoming comedy short wants to create conversation around newborn screening

By admin

27 September 2023

Charity & advocacy

Mitochondrial disease awareness week: let’s move the needle towards effective treatments and cures

By admin

20 September 2023

Charity & advocacy

Creld1 Warriors—bringing the scientific and parent community together

By admin

2 August 2023

Charity & advocacy

Connie Montgomery’s late diagnosis with two rare diseases: factor VII deficiency and pemphigus vulgaris

By admin

19 July 2023

Charity partner news

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Charity partner news

DEBRA launches £5m fundraising appeal to stop the pain of EB

By Rebecca Pender

16 November 2022

Charity partner news

Leading Muscular Dystrophy charity gives petrol heads a ‘driving experience of a lifetime’ as it continues its commitment to delivering life-changing wish-fulfilment experiences to children and young adults

By Rebecca Pender

26 October 2022

Charity partner news

The Student Voice Prize: an international essay competition raising the profile of rare disease

By Rebecca Pender

13 October 2022

Charity partner news

Teddington Trust and XPSG – coming together with a new identity for a new impact driven mission

By Rebecca Pender

1 July 2022

Editor's picks

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Editor's picks

Marie Curie: the inspiring legacy of a great woman of science and our RARE inspiration

By admin

16 August 2023

Editor's picks

RARE Revolution Magazine publishes new impact report – The impact of RARE diseases on sibling experience

By Rebecca Pender

23 January 2023

Editor's picks

World Orphan Drug Alliance (WODA): bringing therapies to underserved patients around the globe

By Rebecca Pender

6 July 2022

Charity & advocacy

Married on a mountain with a collapsed lung

By Rebecca Pender

23 June 2022

Events

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Events

World Orphan Drug Congress Europe 2023

By admin

27 September 2023

Events

The Patient Centricity & Engagement Conference – 10th May – London

By admin

17 March 2023

Events

The Pharma Social Media Conference – 11th May – London

By admin

17 March 2023

Events

Operationalize: Expanded Access Programs Summit (March 21-23, 2023, Boston, MA)

By admin

24 February 2023

Industry Insights

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Industry Insights

Living well with a rare disease: are we really supporting our community to achieve this?

By admin

25 September 2023

Industry Insights

The ABPI Code Partnership events: a step towards better partnerships?

By admin

12 July 2023

Industry Insights

COVID: Three years on—what has changed?

By admin

3 May 2023

Industry Insights

The new world of gene therapy: five questions answered

By admin

8 March 2023

Medical

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Medical

Transitioning successfully from paediatric to adult care in Duchenne muscular dystrophy

By admin

6 September 2023

Medical

The GLISTEN trial

By Rebecca Pender

14 April 2023

Medical

CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy

By Rebecca Pender

17 November 2022

Medical

Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology

By Rebecca Pender

29 September 2022

Patient voice

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Patient voice

Living with cold agglutinin disease: Jörg’s story

By admin

25 September 2023

Patient voice

The physical, mental, and emotional toll of Charcot-Marie-Tooth disease: Joe Hogan’s story

By admin

13 September 2023

Patient voice

Together—every step

By admin

31 May 2023

Patient voice

Generalised arterial calcification of infancy (GACI): Ruben’s story

By admin

17 May 2023

Press releases

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Press releases

CMTUK charity is one of the first UK charities to move from subscription-based membership to a discretionary donation-based charity

By admin

28 September 2023

Press releases

Sickle Cell Disease Association of America holds national convention

By admin

27 September 2023

Press releases

Cooking challenge to raise funds for muscular dystrophy charity gets the backing of celebrity chefs and celebrities from across the UK

By admin

26 September 2023

Press releases

Congratulations to the 2023 winners of the Global Genes Open Science Data Challenge

By admin

22 September 2023

RARE employment

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RARE employment

My year at RARE Youth Revolution

By Rebecca Pender

26 January 2022

RARE employment

Realising our workplace vision

By admin

6 October 2021

RARE employment

RARE Employment Q&A with Police Inspector David Singleton

By admin

6 October 2021

RARE employment

Professional careers and rare disease – finding a balance that works

By admin

6 October 2021

RARE parenting

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RARE parenting

The barista and the quiltmaker: life lessons from strangers

By admin

5 July 2023

RARE parenting

Parenting superpower series – stay listening

By admin

7 October 2021

RARE parenting

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

By admin

7 October 2021

RARE parenting

Bernd’s brave new world

By admin

7 October 2021

RARE Ramblings

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RARE Ramblings

Richard’s RARE Ramblings: accommodating for rare conditions

By admin

9 August 2023

RARE Ramblings

Richard’s RARE Ramblings: Why?

By admin

12 April 2023

RARE Ramblings

Richard’s RARE Ramblings: FEAR!

By admin

8 February 2023

RARE REV-inar

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RARE REV-inar

Gene therapies: a new age of care in rare diseases?

By Rebecca Pender

14 June 2023

RARE REV-inar

ANCA-associated vasculitis and its impact on patients and families

By admin

28 March 2023

RARE REV-inar

Early access pathways to medicines – insights from a multi-stakeholder discussion

By Rebecca Pender

10 November 2022

Science & tech

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Science & tech

LifeArc announces investment of more than £100 million into rare disease research by 2030

By admin

6 July 2023

Science & tech

Engaging patients to shape the research of the future

By admin

21 April 2023

Science & tech

Optimising market access for rare disease products: insights from Craig Caceci

By Rebecca Pender

27 February 2023

Science & tech

The real-world evidence revolution: how better research can improve patients’ lives

By Rebecca Pender

27 October 2022

Sunday sessions

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Sunday sessions

Buddhism, yoga and meditation: how Dee Cowburn is following the path to mindfulness to guide her through life’s darker times

By admin

8 October 2021

Sunday sessions

Relationships can be tricky in a world of rare disease

By admin

8 October 2021

Sunday sessions

Sholto’s war

By admin

8 October 2021

Sunday sessions

Kara LaFrance explores the gift of faith, God and connection in a time of great separation

By Rebecca Pender

18 December 2020

Turning the tide for rare disease

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Turning the tide for rare disease

Alpha-1: best practices for testing for this and other late-onset genetic diseases

By Rebecca Pender

30 August 2023

Turning the tide for rare disease

Life in the slow lane: finding strength after ataxia diagnosis

By admin

23 August 2023

Turning the tide for rare disease

Changing the landscape for the differently-abled community one smile at a time. Dr Sai Kaustuv is our RARE Inspiration

By admin

10 May 2023

Turning the tide for rare disease

Arianna’s Magic Boots: stamping out a taboo in children’s books

By admin

26 April 2023

Weblinks and references

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Weblinks and references

Digital health revolution and its transformative potential for rare diseases – WEBLINKS AND REFERENCES

By Rebecca Pender

13 October 2021

Weblinks and references

References and signposting weblinks for: RARE Patient Partners edition 014

By Rebecca Pender

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