A day in the life

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A day in the life

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

By admin

24 May 2023

A day in the life

A day in the life with hypokalemic periodic paralysis: Ralph Berthiaume

By admin

1 May 2023

A day in the life

A day in the life with Behcet’s disease: Pamela Price

By admin

29 March 2023

Charity & advocacy

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Charity & advocacy

Global Genes and Cure JM Foundation: expanding mental health support for the rare disease community

By admin

7 June 2023

Charity & advocacy

GACI Global: circulating hope for families affected by a rare genetic disease that primarily affects the circulatory system 

By admin

17 May 2023

Charity & advocacy

Ableism can hurt your confidence. Learn to use your voice to regain your personal power!

By admin

19 April 2023

Charity & advocacy

An advocate’s fight across the finish line: learning to live with multiple rare conditions and the trauma of the Boston Marathon bombing

By admin

12 April 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

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

Editor's picks

Saarah’s Foundation: a fitting legacy to Saarah Ahmed—daughter, sister, star student, aspiring neuroscientist, Miss Universe GB contestant and kEDS warrior

By Rebecca Pender

20 May 2022

Events

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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

Events

Rare Disease Innovation & Partnership Summit

By Rebecca Pender

19 January 2023

Medical

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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

Medical

The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s

By Rebecca Pender

14 September 2022

Patient voice

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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

Patient voice

Raymond: A “ray of sunshine” living with VAMP2

By admin

21 April 2023

Patient voice

Going great lengths: a mother and son’s journey with fibular hemimelia

By admin

5 April 2023

Press releases

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Press releases

DNA sequencing in newborns reveals years of actionable findings for infants and families

By admin

5 June 2023

Press releases

Global Genes’ RARE-X issues open call to researchers to participate in the Inaugural Xcelerate RARE Challenge 

By admin

31 May 2023

Press releases

American Kidney Fund will host cystinosis camp as part of national virtual camp for children and teens with kidney disease

By admin

25 May 2023

Press releases

The Muscle Help Foundation launches 20th anniversary celebrations

By admin

16 May 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

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 parenting

Fatherhood and fighting for change in the world of rare disease

By admin

7 October 2021

RARE Ramblings

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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

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

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

Science & tech

Merging the metaverse and the rare disease community: join the conversation

By Rebecca Pender

22 September 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

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

Turning the tide for rare disease

FOP Friends: celebrating a decade of support for the fibrodysplasia ossificans progressiva community

By admin

19 April 2023

Turning the tide for rare disease

Lea Jabre: helping to lift the voice of the stiff person community

By admin

22 March 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