On the 20th June 2019 we received the exciting news from The Charity Commission that Medics4RareDiseases Ltd had been entered onto the Register of Charities with the Registered Charity Number 1183996. Charities exist to benefit the public and Medics4RareDiseases (M4RD) does this through the relief of sickness and preservation of health of those suffering from rare diseases.
Although working as a not-for-profit organisation since inception, Medics4RareDiseases applied to become a UK Registered Charity because we are committed to improving the lives of those living with rare diseases through medical education. Since applying in October 2018 the team have worked with The Charity Commission to satisfy the requirements for registration. A copy of M4RD’s objects and articles of association will be available on the Charity Commission website shortly.
Medics4RareDiseases began life as a student-led medical school society in 2011. Students4RareDiseases (S4RD) was formed in 2013 with the aim to support rare disease learning in medical schools throughout the UK. This was an informal, voluntary organisation made up of the founders of the student society. The level of support from patient groups, industry, clinicians and patients alike clearly indicated an unmet need for this work.
In order to expand the scope of its work, the team behind S4RD registered Medics 4 Rare Diseases Ltd at Companies House in December 2017 and rebranded officially to M4RD on Rare Disease Day 2018.
Dr Lucy McKay, CEO of M4RD, said of becoming a charity “This is the next big step for M4RD and we hope it will bring greater revenue opportunities which we can use to further our important work. As we look to the future, we want to see a medical education system that provides medical students with formal teaching on the fundamentals of rare diseases. The work of M4RD is pivotal in pioneering this change – both in voicing this unmet need and finding ways of remedying it.M4RD wants to shorten the ‘diagnostic odyssey’, that the vast majority of people with rare diseases experience, by striving to create a healthcare profession that feels empowered to diagnose and manage rare diseases.”
Achieving charitable status has been a significant step in achieving that goal. It will enable us to raise funds for projects such as our ‘Rare Disease 101’ teaching and our annual symposium at The Royal Society of Medicine.Dr Lucy McKay
The object of M4RD is the relief of sickness and preservation of health of those suffering from rare diseases, throughout the world, by:
(a) advancing the education of medics, associated professionals and the public in rare diseases, genetic and genomic medicine
(b) promoting research in all areas relating to rare diseases, genetic and genomic medicine and publishing the useful results
(c) promoting improved care and treatment of those suffering from rare diseases.
Our 2019 sponsors are BioMarin, Sobi and Inventiva. More information about these companies can be found by following links on our website. If you would like to join this group of sponsors, and talk to M4RD about funding opportunities to positively impact patients with rare diseases by shortening the diagnostic journey, then please get in touch.