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A day in the life
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A day in the life
A day in the life: living with dyskeratosis congenita (DC)—Paula’s story
By admin
19 April 2024
A day in the life
A day in the life: living with Bardet-Biedl syndrome—Tessa’s story
By admin
16 February 2024
A day in the life
Don’t let your condition define you! David’s journey with stiff person syndrome
By admin
14 February 2024
A day in the life
A day in the life: a medically complex condition that is as unpredictable as the weather
By admin
29 November 2023
Charity & advocacy
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Charity & advocacy
One in a million
By admin
28 February 2024
Charity & advocacy
300 million colours of Rare: three patients and caregivers share their rare disease stories
By admin
28 February 2024
Charity & advocacy
Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round
By Rebecca Pender
27 February 2024
Charity & advocacy
Rare Disease Awareness Day Calendar
By admin
14 February 2024
Industry Insights
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Industry Insights
As we enter a new financial year, how does the UK Budget affect the rare disease community?
By admin
10 April 2024
Industry Insights
Living well today: How do we make it happen for the rare diseases community?
By Rebecca Pender
13 March 2024
Industry Insights
Rare Disease Day 2024: Sheela Upadhyaya previews some of the events taking place across the world
By admin
14 February 2024
Industry Insights
The UK Rare Diseases Framework: Sheela Upadhyaya reflects on recent progress across the UK
By admin
12 February 2024
Letters to the editor
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Letters to the editor
How can we get the patient heard by the regulators?
By admin
27 March 2024
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 admin
14 April 2023
Medical
CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy
By admin
17 November 2022
Medical
Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology
By admin
29 September 2022
Patient voice
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Patient voice
Raising a child with Hirschsprung’s disease
By admin
28 February 2024
Patient voice
Love isn’t rare—Ken To’s journey with Huntington’s disease
By admin
11 February 2024
Patient voice
If you want to make God laugh, tell him about your plans
By admin
31 January 2024
Patient voice
Fostering a positive mind and body
By admin
1 November 2023
RARE employment
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RARE employment
My year at RARE Youth Revolution
By admin
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 News
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RARE News
DREAMS: a new Horizon Europe project brings hope to rare disease patients
By admin
12 April 2024
RARE News
Multidisciplinary expert panel explores the necessity to “shed light” on rare and undiagnosed diseases: an invitation to attend a live event at Harvard Medical School, in-person or virtually
By admin
10 April 2024
RARE News
AKU Society launches Global Patient Registry to drive research into ultra-rare disease alkaptonuria
By admin
10 April 2024
RARE News
New report: If Only You Knew
By admin
10 April 2024
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: Winter is coming… and I am ecstatic!
By admin
13 December 2023
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
Eight challenges in developing rare disease therapies
By admin
25 March 2024
RARE REV-inar
Gene therapies: a new age of care in rare diseases?
By admin
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 admin
10 November 2022
Science & tech
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Science & tech
Beyond development: Overcoming market access challenges for rare disease treatment
By admin
28 February 2024
Science & tech
Dr Wendy Chung and Simons Searchlight: pioneering research into genes that cause rare neurodevelopmental disorders
By admin
21 February 2024
Science & tech
Faster diagnosis for patients with rare diseases
By admin
24 January 2024
Science & tech
The Undiagnosed Diseases Network’s mission to eradicate the diagnostic odyssey: an interview with Sarah Marshall
By admin
6 December 2023
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 admin
18 December 2020
Turning the tide for rare disease
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Turning the tide for rare disease
Jenny Decker attempts to sail solo around the globe to raise awareness of Charcot-Marie-Tooth disease
By admin
15 April 2024
Turning the tide for rare disease
Guiding Grayson: a family’s fight to advocate, educate and save their son, Grayson, from CLN3 Batten Disease
By admin
21 February 2024
Turning the tide for rare disease
Congenital muscular dystrophy: Kelly and Avery’s mission to challenge perceptions of disability
By admin
7 February 2024
Turning the tide for rare disease
Alpha-1: best practices for testing for this and other late-onset genetic diseases
By admin
30 August 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 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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