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A day in the life
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A day in the life
If you’re not dancing something is wrong…
By admin
1 May 2024
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
Charity & advocacy
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Charity & advocacy
Bridging gaps in care: How independent charitable patient assistance organisations support underserved populations
By admin
10 July 2024
Charity & advocacy
A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?
By admin
18 June 2024
Charity & advocacy
Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation
By admin
31 May 2024
Charity & advocacy
Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me
By admin
29 May 2024
Industry Insights
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Industry Insights
Early access to medicines: A picture is worth a thousand words
By admin
17 July 2024
Industry Insights
What can rare disease services learn from oncology services? A personal reflection
By admin
1 July 2024
Industry Insights
What are the next steps for rare disease innovation in the United Kingdom?
By admin
15 May 2024
Industry Insights
As we enter a new financial year, how does the UK Budget affect the rare disease community?
By admin
10 April 2024
Letters
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Letters
Sarcoma Awareness Month: Sarcomas demand urgent awareness and education to prevent poor outcomes
By admin
24 July 2024
Letters
“Glass siblings”: an unnecessary label
By admin
24 June 2024
Letters
When children take their first breath, their care is fully funded. Why isn’t it when they take their last?
By admin
31 May 2024
Letters
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
How CLN2 Batten disease changed our life: “A Mother’s Love”
By Joe Rumney
16 May 2024
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
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
The CMT Research Foundation’s 2024 Global CMT Research Convention to gather renowned scientific experts and patients to discuss status of treatments and cures for Charcot-Marie-Tooth (CMT) disease
By admin
19 July 2024
RARE News
NHL All-Star Ryan Getzlaf returns to the links for the 13th Annual Getzlaf Golf Shootout on September 13-14, benefiting CureDuchenne
By admin
17 July 2024
RARE News
Challenges and priorities for the PSP and CBD community: Insights from Mark Jackson
By admin
12 July 2024
RARE News
The CMT Research Foundation to launch grant program to support young investigators working on CMT
By admin
12 July 2024
RARE parenting
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RARE parenting
A road less travelled is no less worthy: A RARE mum’s reflections on special needs parenting
By admin
21 June 2024
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 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
Precision in patient data: How genetic databases are helping to shape rare disease population studies
By admin
8 May 2024
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
Sunday sessions
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Sunday sessions
Goodness and mercy: my lupus journey
By admin
28 April 2024
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
Turning the tide for rare disease
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Turning the tide for rare disease
I am Celine Dion: The stiff person syndrome community reacts to the release of Dion’s documentary
By admin
22 July 2024
Turning the tide for rare disease
The UK General Election 2024: Ensuring rare diseases remain a priority
By admin
24 June 2024
Turning the tide for rare disease
Accelerating treatment access in the United States through financial assistance, education and advocacy
By admin
6 June 2024
Turning the tide for rare disease
A rare dad’s journey: Inspiring change for the rare disease community in Rwanda
By admin
22 May 2024
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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