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RDD Spotlight edition - Hereditary angioedema
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Latest Edition
RDD Spotlight edition - Hereditary angioedema
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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
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