research

2nd November 2022

Large Vessel Vasculitis

Mariam Al-Attar Ambassador, disease doctor in training, large vesel vasculitis, rare disease, research, Rheumatology, Vasculitis

Dr Mariam Al-Attar is currently a Internal Medical Trainee doctor at Northern Care Alliance. She graduated from Lancaster University where she held a number of positions that make her qualified […]

24th June 2022

BBS UK Annual Conference 2022

Jo McPherson Annual Conference, Bardet-Biedl syndrome, HCP, rare disease, research 0

This highly-anticipated event provides the unique opportunity to learn about the latest research, treatments, and day to day management of BBS, network with like-minded professionals and more importantly, learn from […]

28th April 2022

Facing up to the genomic gap: Tackling equality and diversity in genomics on

Jo McPherson Diversity, Equality, Genomics, research 0

This webinar is part of the popular Genetics of webinar series and will discuss the challenge of equality and diversity in genomic research and clinical settings and strategies to address this. Genomic […]

22nd January 2020

The 10th European Conference on Rare Diseases & Orphan Products (ECRD)

Jo McPherson clinicians, patient advocacy, policy makers, rare disease, research, stakeholders 0

People living with a rare disease have the right to reach their highest potential of well-being; join us online for ECRD 2020 to take part in discussions to inform and build the future ecosystem for rare disease policies and services.

22nd August 2019

Pompe Preceptorship

Jo McPherson AGSD, biochemistry, genetics, metabolic, Pompe, research 0

Pompe Preceptorship, hosted by Mark Holland from the Metabolic Unit, Manchester

29th May 2019

BPSU Tea Party

Jo McPherson BPSU, child and young person, clinical, CYP, parent or carer, patient experience, rare disease, research, social, trainee 0

The British Paediatric Surveillance Unit invites you to this year’s event to enjoy afternoon tea and cakes, hear young people speak about their experience of living with rare disease and visit informational stands.

24th July 2018

The M4RD Red Flags Survey Launches Today!

Lucy McKay Uncategorised education, M4RD red flags survey, med student, medical education, medical student, medicine, rare disease, red flags, red flags of rare disease, research, survey

Medics4RareDiseases are excited to announce the launch of their new research project: The M4RD Red Flags Survey. The purpose of the survey is to find out what different rare diseases have in common during the time before diagnosis, a period often called ‘the diagnostic odyssey’. We need all UK based patient groups to take part. Read more to find out how…