On 11th July 2022 we received the exciting news from The Charity Commission that Medics4RareDiseases Ltd had been converted to a Charitable Incorporated Company (CIO).
Although working as a not-for-profit organisation since inception, Medics4RareDiseases become a UK Registered Charity in June 2019 and has remained committed to improving the lives of those living with rare diseases through medical education.
Becoming a CIO means that we no longer report to both Companies House and the Charity Commission, just the CC. This means less adminiatrion and more time for making an impact!
A copy of M4RD’s objects and articles of association and new constitution are available on the Charity Commission website.
The objects for which the Company is established for is the relief of sickness and preservation of health of those suffering from rare diseases, throughout the world, by: advancing the education of medics, associated professionals and the public in rare diseases, genetic and genomic medicine; promoting research in all areas relating to rare diseases, genetic and genomic medicine and publishing the useful results; and promoting improved care and treatment of those suffering from rare diseases.
Medics4RareDiseases exists to provide education and practical tools targeted at medical professionals, enabling them to reduce the diagnostic odyssey and improve the patient experience.
About the team
M4RD was founded by Dr Lucy McKay and two of the current trustees. Lucy is now the CEO of the charity and has personal experience of the lifetime consequences of rare diseases. Following first hand experience of the lack of rare disease education in a medical curriculum, Lucy and some like-minded medical students set up a medical school society that would eventually grow into Medics4RareDiseases.
The charity now has four paid employees and a talented and highly involved board of trustees. The team collectively includes four doctors (including two working GPs) and a clinical geneticist, alongside truly talented people with extensive experience within the remit of rare disease, charity, business and commercial sectors.
A new approach to rare disease medical education
Over the last 10 years Medics4RareDiseases has refined a disease-agnostic approach to medical education about rare disease. Rather than cherry-picking a small number of rare conditions we teach about rare disease as a group akin to cancer. Providing our audience with a core competency in rare disease.
This approach has been developed based on countless patient stories told at events, in blogs, in essays, on podcasts. Plus input from the many clinical and advocacy professionals diligently working in this field. We reframe rare disease to educate doctors on why rare disease is relevant to their clinical careers. It focuses on what rare disease is, what the common challenges of living with a rare disease are and pragmatic advice and practical tips on how to manage both undiagnosed and diagnosed patients with rare diseases. Plus sign-posting to all the under-utilised resources available to doctors.
Our 2022 sponsors are Alexion, Amicus, BioMarin, Bioncal Emas, Healx, Kyowa Kirin, Orchard Therapeutics, PTC Therapeutics & Sobi. M4RD does not endorse any companies or products. M4RD is operated independently from these companies and they have no editorial control over M4RD’s content or activities. Click here to find out more.
If you would like to support M4RD and benefit from our exciting partnership opportunities as we continue to work together to improve the patient experience and encourage others to #daretothinkrare then please get in touch with Jo McPherson.