Charity & advocacy

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Charity & advocacy

Teach RARE: a family’s rare disease journey continues by supporting caregivers with special education teaching and learning

By Joe Rumney

15 March 2023

Charity & advocacy

“Are we there yet?” Designing communication initiatives based on community needs – the Comms Working Group at SMA Europe

By admin

15 March 2023

Charity & advocacy

“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease

By Geoff Case

8 March 2023

Charity & advocacy

#DuchenneCan: celebrating what people with Duchenne CAN achieve

By Rebecca Pender

5 December 2022

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

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

Events

Cell & Gene Therapy Summit 2023

By Rebecca Pender

18 January 2023

Events

World Orphan Drug Congress 2022 – Europe’s most exciting orphan drug event

By Rebecca Pender

10 October 2022

Medical

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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

Medical

Intrahepatic cholestasis of pregnancy: a rare liver disorder that causes risk to unborn babies—the unique insights of Dr Laura Bonebrake, physician and ICP mother

By Rebecca Pender

29 June 2022

Patient voice

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Patient voice

Wings of Fire: escaping the shadows of a rare disease that was undiagnosed for 25 years

By Rebecca Pender

11 January 2023

Patient voice

Passing on a rare disease: a RARE mother’s journey from ‘blameless guilt’ to joy

By Rebecca Pender

5 September 2022

Patient voice

Saying goodbye to the Children’s Hospital

By Rebecca Pender

15 August 2022

Patient voice

Making peace with numbers

By Rebecca Pender

6 June 2022

Press releases

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Press releases

Sickle Cell Disease Association of America to promote clinical trials

By admin

16 March 2023

Press releases

RARE Youth Revolution announces new genetics and relationships project — ‘My life, my genetics’

By admin

28 February 2023

Press releases

Celebrating Rare Disease Day and 40 years of the Orphan Drug Act advocating for rare disease patients and their families

By admin

22 February 2023

Press releases

Project Sebastian is pleased to announce our second annual rare warrior 5 x 5 challenge!

By admin

17 February 2023

RARE employment

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RARE employment

Join our team

By Rebecca Pender

29 August 2022

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 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: FEAR!

By admin

8 February 2023

RARE REV-inar

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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

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

Science & tech

Sure, you’ve heard about GNEM. But do you know about the Bulgarian variant?

By Rebecca Pender

19 May 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

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

By admin

22 March 2023

Charity & advocacy

“Rare disease knows no borders”: EURORDIS-Rare Diseases Europe and US-based EveryLife Foundation for Rare Diseases team up against the global public health crisis of rare disease

By Geoff Case

8 March 2023

Turning the tide for rare disease

Aaron Jackson: raising awareness of organ donation, and bringing hope to the transplant community

By admin

15 February 2023

Turning the tide for rare disease

A new year brings new opportunities: Global Genes – supporting patients, caregivers, advocates and organisations

By admin

1 February 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