Medics For Rare Disease

Rare Disease Day 2019
2019-02-28
28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities.

Medics 4 Rare Diseases would love to know how you’re raising awareness on Rare Disease day. Tell us in the comments below or Tweet using @M4RareDiseases and #RareDiseaseDay.

The Unusual Suspects: Rare Diseases In Everyday Medical Care
2019-02-20 12:30 - 18:00 UTC | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
This is an RSM and Medics 4 Rare Diseases joint event where clinicians at all stages of their training, will be informed about why rare diseases are important to everyday medicine.
Delegates will get the opportunity to explore how generalists can approach patients with rare diseases, and become advocates for them. Hear a real patient experience who has two rare diseases – one of which was diagnosed during an OSCE. And learn about the role genomics plays in everyday medicine.
Topics include:

How rare diseases are relevant to every doctor’s career in medicine
The challenges shared by patients with rare diseases and explore how doctors can help them with these
The role of genomics in everyday medicine
How the work of Medics 4 Rare Diseases and the RSM Genetics Section play a role in rare disease education

3 CPD Points awarded
Key Speaker: Dr Ellen Thomas, Clinical Lead for NHS Genomic Medicine at Genomics England
View the full agenda
Rates
RSM member: £15
Non member: £25
Registration starts at 12.30 and the event begins at 1pm.

Please note: The RSM site is currently down for maintenance and reopens 10th February. Please use the form below to reserve your tickets. To book via the RSM site from 10th February, click here.
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Information Day On Fibromuscular Dysplasia (FMD)
2019-01-19 09:30 - 16:00
Fibromuscular Dysplasia (FMD) is evolving from a rare disease of renal arteries accounting for a minority of cases of secondary hypertension in young women, to a ‘systemic’ vascular disease which can also affect cervico-cephalic, coronary, and iliac arteries.
This patient information day will aim to explain what FMD is, challenge previous misconceptions about FMD and highlight the latest work being undertaken by registries and research.
Come and hear from expert international guest speakers such as Prof Alexandre Persu (lead for European FMD registry) and Prof David Adlam (UK expert in spontaneous coronary artery dissection (SCAD)), as well as celebrity chef and FMD/ SCAD sufferer, Sally Bee. This day will be of interest to clinicians, patients and carers alike. Any further information, contact tina.chrysochou@srft.nhs.uk or @FmdsUk
Patients with FMD in any arterial bed can be uploaded to FMD RADAR.
Please refer to the Agenda for further information.

Prospects For New Treatments In Rare Diseases
2018-12-03 18:00 - 20:00
Dr Melita Irving, Consultant Geneticist, President of The Genetics Section of The Royal Society of Medicine and long-term friend of M4RD…is hosting this evening lecture organised by the awesome King’s College Medical Genetics Society. Rare Diseases is an exciting field to be working in these days as new treatments are emerging for previously untreatable conditions. Come along and find out more!
Keep up to date about this event and lots of others organised by KCL Medical Genetics Society on their Facebook page.

Rare Disease Day 2019
2018-12-01 | Guildhall Cambridge, Cambridge, United Kingdom
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively.
Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this. RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond.

Rarefest 2018
2018-11-30 09:00 - 2018-12-01 10:00
It’s 2018 and rare diseases are still not being consistently diagnosed, treated and supported effectively. RAREfest is a first-of-its kind rare disease inspired festival conceived and brought to you by Cambridge Rare Disease Network (CRDN). Free to attend, this 2-day festival will shine a light on some successes and innovative solutions that are striving to address this. RAREfest will raise awareness of rare conditions and bring together all stakeholders in the rare disease community alongside the general public from across Cambridgeshire and beyond. We are proud to be supporting RAREfest. For more information visit the event website. #RAREfest18

Diagnostic Challenges And Clinical Management Of Dna Repair Disorders
2018-11-28 08:30 - 17:00
Topics Include:

The cellular biology of DNA repair disorders
The clinical presentation of DNA repair disorders
Updated expert guidance on the clinical management of DNA repair disorders
What DNA repair disorders can teach us about the process of ageing
How specialist services for DNA repair disorders are structured and how they were established
What it is like to live with a DNA repair disorder

Find out more here
