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Medical
Medical
Systemic mastocytosis: A new study reveals the perceptions and realities of this rare mast cell disorder
By CONTRIBUTOR
2 October 2024
Medical
Goal Attainment Scaling: delivering patient-centred clinical trials using personalised outcome measures
By Geoff Case
11 September 2024
Medical
Transitioning successfully from paediatric to adult care in Duchenne muscular dystrophy
By CONTRIBUTOR
6 September 2023
Medical
The GLISTEN trial
By CONTRIBUTOR
14 April 2023
Medical
CATNAP® registry: collecting real-world data to enhance understanding of paediatric narcolepsy
By CONTRIBUTOR
17 November 2022
Medical
Sanius Health’s mission to personalise care for people with sickle cell disease—using advanced wearable technology
By CONTRIBUTOR
29 September 2022
Medical
The RAPSODI study: an online study to understand the association between the Gaucher-causing gene and Parkinson’s
By CONTRIBUTOR
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 CONTRIBUTOR
29 June 2022
Medical
Inozyme Pharma: developing therapies for abnormal mineralisation disorders
By CONTRIBUTOR
9 June 2022
Medical
What can we learn from European rare disease policies to future-proof our health systems?
By CONTRIBUTOR
4 April 2022
Medical
Seeing Red
By CONTRIBUTOR
26 November 2021
Medical
Zebras do exist: the diagnostic odyssey of rare disease patients
By CONTRIBUTOR
13 July 2021
Medical
Phase 3 ‘Proof-HD’ trial begins in Europe for people with Huntington disease
By CONTRIBUTOR
28 January 2021
Medical
UK’s largest ever NHS rare disease diagnosis programme launched by Mendelian and Modality NHS Partnership
By CONTRIBUTOR
17 December 2020
Medical
Anavex Life Sciences is the company to learn from according to the rare disease advocacy community
By CONTRIBUTOR
16 December 2020
Medical
Alan Finglas, founder of MSD Action Foundation and Saving Dylan, contemplates EU policy and the potential it has to open the gates for real change in the rare disease community
By CONTRIBUTOR
28 July 2020
Medical
Why the COVID-19 pandemic may be particularly challenging for families living with rare conditions
By CONTRIBUTOR
17 July 2020
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