rare disease

31st May 2022

Rare Diseases Action Plan Focus on Action 6

Emma Huskinson M4RD, raredisease, Report, UK Rare Disease Framework HCP, medical education, rare disease, Rare Diseases Action Plan

In this post Emma will focus on Action 6 of the England Rare Disease Action Plan; develop an innovative digital educational resource. This is the first action listed in the Plan […]

26th May 2022

Rare Disease Action Plan 2022 – focus on priority 2, action 7

Emma Huskinson M4RD, Report, UK Rare Disease Framework HCP, M4RD, medical curriculum, medical education, rare disease, Rare Diseases Action Plan, undergraduate

In my last post I introduced some of M4RD’s initial thoughts on the Rare Diseases Action Plan 2022 Action 6. Now I’d like to continue exploring Priority 2; ‘increasing awareness […]

25th May 2022

Understanding rare disease: communicating with patients

Jo McPherson daretothinkrare, M4RD, M4RD Events, M4RD Learn, medicalstudent, Rare Disease 101 Find The One In 17, HCPs, I am number 17, M4RD, medical education, medical student, rare disease

M4RD is delighted to announce that we will be hosting an interactive virtual event exclusively for medical students wishing to learn more about complex communication skills. This event is initiated […]

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24th May 2022

Understanding Rare Disease: Communicating with Patients

Jo McPherson Communication Skills, Diagnostic odyssey, IamNumber17, medical students, online events, Online seminars, OSCE, rare disease 0

Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event! About this event The event will kick off […]

28th April 2022

A REAL Rare Rollercoaster – from Paramedic to Patient

Melissa Clasen interview, patient, Podcast, raredisease diagnosis, doctor, medical education, rare disease, Renal Nutcracker Syndrome, SMA, Superior Mesenteric Artery Syndrome, Wilkie Syndrome

All aboard this ride! This week, on The Rare Disease Podcast 4 Medics, I had the honor to speak to a paramedic, turned patient. Marie was a practicing student paramedic […]

8th April 2022

Online workshop: Understanding access and reimbursement

Jo McPherson Access to treatment, patient groups, rare disease, Reimbursement 0

Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process, especially for patient groups who are working to secure research […]

7th April 2022

Curing with Kindness: Rare Childhood Brain Tumours (Pint of Science)

Jo McPherson brain tumours, CRDN, Pint of Science, rare disease 0

Researchers developing new treatments for children with rare brain tumours know that it’s not a case of treating children like tiny adults and that surviving the disease isn’t enough. Reducing […]

7th April 2022

Not All Genes are Equal (Pint of Science)

Jo McPherson CRDN, genetics, Pint of Science, rare disease 0

Every person has two copies of each gene, one inherited from each parent. Most genes are the same in all people, but a small number of them are slightly different. […]

5th April 2022

M4RD joins forces with Bionical Emas to launch new online training

Jo McPherson M4RD, M4RD Learn, medicalstudent, Rare Disease 101, raredisease Bionical Emas, Clinical research, clinical trials, Early access programmes, M4RD, rare disease

Medics4RareDiseases (M4RD) is happy to announce it has collaborated with Bionical Emas, a global Contract Research Organisation, to launch new online training for healthcare professionals. The mini-module is comprised of […]

30th March 2022

Fifty Years For a Fibular Hemimelia Diagnosis

Melissa Clasen interview, M4RD, patient, Podcast congenital, diagnosis, fibula hemimelia, medical education, rare disease

Fibular Hemimelia is a rare congenital condition characterised by the complete or partial absence of the fibula bone. It is the same condition which afflicted athletes Aimee Mullins and Oscar […]