Medics For Rare Disease

Facing up to the genomic gap: Tackling equality and diversity in genomics on
2022-07-07 17:30 - 18:30 (Europe/London) | LIVE STREAM
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 research has traditionally been focused on caucasian populations, which leads to inherent biases in genomic findings translated into clinical research. Underrepresentation of other populations in genomic datasets and biobanking endeavours leads to genomic medicine services being underutilized and inaccessible to these communities.
During this webinar you will:

Understand that genomic data is under-representative of many minority populations which has a direct impact on genomic research
Develop an idea of how the scientific community is trying to address this issue
Appreciate the challenges of ensuring that diverse communities are able to access the genomic medicine service
Describe strategies that are being undertaken to try and improve genomic testing provision within diverse communities

Patient partnerships: Improving healthcare equality from pandemic to endemic
2022-10-29 13:00 - 16:00 | LIVE STREAM
The purpose of this event is to promote partnerships between patients and the medical profession to pave the way for a better, more inclusive healthcare system as we rebuild after the pandemic. By strengthening this relationship, we aim to ensure patients never feel isolated when they are at their most vulnerable. We will discuss real-life examples of partnerships and their successes.
There will be a series of presentations and workshops by students and experienced professionals on non-technical aspects of medical practice, such as political challenges with the public health service and humanitarian values. The event will end with a prize-giving ceremony for the Dr Edwin Doubleday essay award, which funds medical students aspiring to improve the relationship between patients and the medical profession.
Aims of the event:

To highlight the role and importance of patient partnerships
To educate the medics of tomorrow about non-technical aspects of practice
To inspire attendees to improve the relationship between patients and the medical profession
To give attendees the chance to improve their presentation and networking skills

This event is run in association with the University of Manchester Doubleday Centre and the Doubleday Medical Schools Patient Partnership Collaboration.
Students are invited to submit an essay using this link below to enter the Doubleday Student Prize.

Advances in renal genetics
2022-12-08 | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
Attend this meeting for a comprehensive update on the clinical management of genetic and inherited kidney diseases, including cystic and basement membrane disorders, podocytopathies and tubulopathies, in both children and adults.
We will review the evolution of new genomic methodologies, including how they are informing our knowledge of kidney disease pathogenesis and outcomes, and their potential impact on patient care in the future.
Aims of the event include:

To describe recent developments in the management of inherited kidney diseases
To consider the present and future impacts of novel genomic approaches in nephrology
To explore the development of local and national genetic services in the NHS

Book to attend this event in person or virtually. To view the rates and agenda, please select your preference below.

The Unusual Suspects: rare disease in everyday medicine
2023-02-15 12:30 - 18:00 | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
We are delighted to announce our 10th annual symposium and, for the first time since 2020, it’s returning live and in-person!
SAVE THE DATE… Join us on Wednesday 15th February 2023 at 1 Wimpole Street for M4RD’s annual symposium ‘The Unusual Suspects: rare disease in everyday medicine’.
The Unusual Suspects has been a popular event in the rare disease calendar for many years, allowing healthcare professionals at all levels, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole, with a large focus on improving awareness and management and the lived patient experience.
Following our online symposiums in 2021 and 2022, we are excited to be back in London hosting this event from the home of the Royal Society of Medicine, in the Wheatley Room. The theme this year will be on mental health and will follow the launch of our new MH module being launched on M4RD Learn in 2023.
This is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease. We will hear from patients, parents, advocates and clinicians.
This event will also be available to live stream if you are unable to join us in person.
Click here for more details, including our programme and how to register.

The Unusual Suspects: Rare Disease in Everyday Medicine 2024
2024-02-21 12:00 - 18:00 | The Royal Society of Medicine
The aim of the meeting is to inform doctors that rare diseases are collectively common and relevant to every medical career. Very different rare diseases face similar challenges, including navigating healthcare which can be alleviated by a medical profession that understands what living with a rare disease means to a patient and their larger community.
The focus for this year’s event will be communication and inclusivity in rare disease. The majority of people living with rare conditions will never receive a disease-modifying treatment or benefit from a specialist service. Often a system built on evidence-based medicine doesn’t work for patients who have little evidence about their condition. This can leave their clinicians feeling helpless and the patient feeling isolated.
This session will help participants build on their listening and communication skills for the benefit of people living with untreatable long-term conditions.
The speakers confirmed for the event are:
▪ Dr Lisa Kauffmann, Consultant community paediatrician & Associate Medical Director at children’s community health services, Manchester Local Care Organisation
▪ Jono Lancaster, Author of ‘Not All Heroes Wear Capes’
▪ Hope Russell-Winter, Ambassador for M4RD and Runner-up on The Voice UK
▪ Kevin Ward, NHS Healthcare Improvement Scotland WMTY movement
▪Kerry Leeson, CEO, Breaking Down Barriers
▪Aisha Seedat, M4RD Patient Ambassador and her sister Saffiya Seedat who is an ardent advocate for individuals with rare diseases
▪Leisha Devisetti – The winner of the Student Voice Prize 2023
