rare disease

14th October 2021

Top tips for managing rare disease in GP

Jo McPherson General Practice, GP, Managing Rare Disease, rare disease 0

The RCGP Northern Ireland Faculty is delighted to be collaborating with the Northern Ireland Rare Disease Partnership (NIRDP) to host a ‘Top Tips for Managing Rare Disease in GP’ evening. […]

6th October 2021

Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination

Jo McPherson ADREnt, COVID19, Medicine & Me, rare disease, royal society of medicine, rsm 0

During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare […]

6th October 2021

Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework

Jo McPherson ARDEnt, COVID-19, rare disease, royal society of medicine, rsm 0

Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the […]

29th September 2021

Not your usual heart attack

Jo McPherson daretothinkrare, disease, interview, medicalstudent, patient, raredisease, Uncategorised diagnosis, Heart, medical education, patient voice, rare disease, SCAD, Spontaneous Coronary Artery Dissection

Heart attacks may not be rare but SCAD is! Today is World Heart Day and although heart attacks may not be rare, there are other causes of heart attacks that […]

15th September 2021

The impact of living with Myotonic Dystrophy

Jo McPherson disease, Genetics, interview, patient, raredisease diagnosis, dystrophy, genetic, MD, medical education, muscular, myotonic, Myotonic Dystrophy, patient voice, rare disease

Doctors are patients too Genevieve Allum is a 34 year old GP who specialises in Dementia and lives on South Coast with her partner. Genevieve was diagnosed with Myotonic Dystrophy […]

7th September 2021

Wolfram Syndrome UK and WellChild International Virtual Conference (Part 1)

Jo McPherson doctors, international, rare disease, researchers, Wolfram Syndrome 0

Register for your place on this international virtual conference hosted by Wolfram Syndrome UK and WellChild. The 10th WS conference will again be held as virtual events over 2 Saturdays […]

7th September 2021

NORD Breakthrough Summit

Jo McPherson NORD, NORDsummit, orphan drugs, rare disease, Summit 0

NORD Rare Diseases and Orphan Products Breakthrough Summit is back on 18 & 19 October 2021 offering a two-day virtual programme. The summit will discuss the latest updates on: rare […]

20th August 2021

The Unusual Suspects: rare disease in everyday medicine

Jo McPherson equity, M4RD2022, medical education, medical genetics, rare disease, royal society of medicine, rsm, sumposium 0

The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February! The M4RD Annual Symposium has been a popular event in the rare disease […]

19th August 2021

Findings from the NCARDRS rare disease collection discovery phase

Jo McPherson National Disease Registration Service, NDRS, rare disease, webinar 0

This webinar is about the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) which is part of NDRS As part of the National Disease Registration service (NDRS) webinar series, […]

20th July 2021

Afternoon Tea with the Childhood Tumour Trust

Jo McPherson Afternoon tea, Care, diagnosis, neurofibromatosis, rare disease 0

Want to learn more about Neurofibromatosis Type 1, with a focus on diagnosis and care? Come along to Danesfield House at 1.30pm on Friday 6th August for Afternoon Tea with […]