Proud to be a part of something special
A little bit about some of the organisations M4RD work with…
Beacon is a UK-based non-profit organisation that is building a united rare disease community with patient groups at its heart. Their patient group trainings help these often small and voluntary organisations to form, grow, and professionalise. It is through their events and trainings that patient groups have the opportunity to connect and collaborate with others across the rare disease space. At Beacon, they believe that no one should face their rare journey alone.
The Student Voice Prize is an annual, international essay competition that raises the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may have never come across rare diseases in their training. M4RD and Beacon host the competition together and the winner is published in The Orphanet Journal of Rare Diseases. Visit the official Student Voice Prize website to learn more!
Cambridge Rare Disease Network – MAKING RARE DISEASES VISIBLE AND VOCAL, SEEN AND HEARD
One in 17 people will develop a rare disease at some point in their lives – that’s 3.5 million in the UK alone and 350 million worldwide. Most of these diseases manifest in early childhood and many are life-limiting conditions. Individually the unmet needs of those living with a rare condition are often seen in isolation. We bring their voices together to create a powerful regional chorus.
Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges faced by people affected by rare diseases. By sharing knowledge and experience, and working together, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain.
emotive are a global healthcare communications agency who inspire change that has a positive impact on people’s health. They’ve inspired change across the healthcare landscape, including rare diseases, advanced therapies and public health and continue to strive for change each and every day.
Rare Revolution Magazine
Rare Revolution Magazine is a FREE, quarterly digital magazine for the Rare disease community and those wishing to learn more and be inspired by their stories. It seeks to give RARE patients and the charities that represent them a voice to be heard on their terms, while providing useful tips, guidance, features and current news. From their quarterly core magazine editions to special regional and disease specific spotlight editions they aim to raise awareness worldwide for those navigating the rare disease journey whether that be as a patient, a caregiver or industry employees. Their charity partnership scheme allows rare disease patient organisations access to a rapidly growing news platform of key stakeholders. Their website hosts a wealth of stories from patient voice blogs, thought leadership articles, #TurningTheTide4RAREDisease campaign and their people of rare series which highlights some of the incredible work people are doing all across the community. Additional they run RARE Youth Revolution which is a community run by young adults with a rare disease for young adults with a rare disease and the Illuminating RARE Talent Internship programme which seeks to provide meaningful work experience for those in the RARE Youth community.
Genetic Alliance UK
Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Their members and the people they support are at the heart of everything they do.
GAUK advocate for fast and accurate diagnosis, good quality care and access to the best treatments. They actively support progress in research and engage with decision makers and the public about the challenges faced by our community.
GAUK run two long standing projects:
- Rare Disease UK: A campaign focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that people and families living with rare conditions have access to a final diagnosis, coordinated care and specialist care and treatment.
- SWAN UK: The only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed.
raremindsCIC is a UK based, non-profit organisation supporting the mental health of rare disease patients and family members. They provide access to specialist counsellors and psychotherapists trained in working with rare diseases.
They work in partnership primarily with rare disease organisations and patient charities to provide individual and group counselling, workshops, and support and training for Community Leaders and Healthcare Professionals. Their Clinical team are all qualified and experienced counsellors and psychotherapists who have received additional training in the extensive psychosocial, physical and mental health challenges faced by those diagnosed with a rare disease.
They aim to raise awareness, and inform policy and practice, to ensure mental health support becomes integral to rare disease patient care overall.
The Royal Society of Medicine
The Royal Society of Medicine is one of the UK’s leading providers of continuing learning in healthcare. Their vision is ‘better healthcare for better lives’. They aim to achieve this by sharing learning and supporting innovation on the science, practice and organisation of medicine. Visit RSM’s website to learn more!