Medics 4 Rare Diseases

🚩 Delayed Diagnosis 🚩is one of the seven 'Red Flags' of Rare Disease according to our recent study published in the Orphanet Journal of Rare Diseases. This extended period without a diagnosis is so common amongst those with rare conditions that it is widely termed the ‘diagnostic odyssey’ and often involves a myriad of tests and investigations, multiple referrals and misdiagnoses. For some, the diagnosis may never come! To read the full report, head over to https://lnkd.in/epv4tF8U #medics4rarediseases #daretothinkrare #redflagsofraredisease #medicaleducation

M4RD has been spotted in the British Medical Association's BMJ with an article entitled 'Finding the zebra' written by Seren Boyd with contributions from Dr Beth Meek, one of our ambassadors! You can read the full article here: https://lnkd.in/gShvHKjC #DareToThinkRare #Medics4RareDiseases

Applications for medical students, clinicians and allied healthcare professionals to join our ambassador programme are STILL OPEN until 2nd August. Our ambassador programme enables M4RD to work with the wider rare disease community, learning from the expertise and experience of those both living with and working in rare disease. The programme provides an opportunity for successful candidates to build on their advocacy skills and to integrate themselves into the rare disease community. We usually only offer places to people who don’t already have a platform to grow these skills and we are unable to accept applications from outside the UK. For more information and to apply please visit https://lnkd.in/euyDkScx #daretothinkrare #medics4rarediseases #medicaleducation #advocacy #raredisease

This week found the whole M4RD team in Manchester for two days! On Wednesday we attended Rare@Manchester at City Labs 1 hosted by Manchester Rare Conditions Centre. As well as a fantastic display of posters, we heard from some great speakers, including our very own Lucy McKay who gave a talk all about M4RD, Rare 101 and paid tribute to Prof Ed Wraith. Thursday was spent as a team taking the opportunity to catch-up face-to-face, prioritise and talk strategy! We sure do have some exciting projects planned for the months ahead... and we can’t wait to share them with you all! #rarediseaseawareness #rarediseaseadvocacy #rarediseaseadvocate #daretothinkrare #medics4rarediseases

We are delighted to announce the appointment of our new Training Programme Manager - Dr. Helen Maginnis! Helen's will have oversight and responsibility for M4RD's healthcare professional training projects and activities and will be key to rolling out Rare Disease 101 training for healthcare professionals all over the UK! As well as planning and delivering training events, Helen will co-lead M4RD’s Ambassador Programme alongside Jo McPherson, managing the clinical and medical student ambassadors. Helen studied medicine and genetics at the University of Glasgow where her interest in rare disease began. After working as a junior doctor, she spent several years supporting families impacted by Huntington’s disease before joining M4RD. Helen lives in Glasgow and loves escaping into the Scottish countryside. We are so excited to have Helen join our small but mighty team - please join us in welcoming her! #DareToThinkRare #Medics4RareDisease #Team #TrainingProgrammeManager

What. A. Day! Our second annual 'Ambassador Lunch & Learn' took place at the Wallacespace in Clerkenwell Green, London yesterday - and it did not disappoint! We kicked the meeting off with some personal reflections around the room - an opportunity for the ambassadors to share their experiences during the last year on the programme. "Being an ambassador 'I am heard and I am seen!'" Hearing how the programme has been a "space to come back to" and that "Being part of the M4RD family makes you go the extra mile (in a busy NHS)" were just some of the shining testimonials of how successful it has become because of the people taking part! We were also joined by Jonathan Lancaster, Dr Amy Frost NHS National Genetics and Genomics Education Centre, Nadira Bullock & Kayuri Odedra MPharm from Alexion Pharmaceuticals, Inc. and S. Christy Rohani-Montez, PhD & Karen Reid from Medscape Education Global. Each of our speakers had been sent some questions in advance of what the ambassadors would like to learn from their sessions and covered these - and more - in their presentations. Thank you for coming along and being part of the day! But the biggest shout out goes to each and every one of our ambassadors - not only those who were able to attend on the day. Over the past 12 months we've seen: some amazing events being led, rare disease societies being formed, Rare 101 training being delivered, blogs being written, podcasts being recorded and overall just a wonderful sense of 'community' within the online brews and our own WA group! We have some exciting plans for future development of our programme, and it's not too late to apply to join our 2024/2025 cohort. Find out more here: https://lnkd.in/euyDkScx And we even managed to get a great group shot! Aisha Seedat Corrinne Hepworth Dr Beth Meek Emily Livesey Daval Amratlal Hope Winter Dr Lauren Ferretti Dr Grace Knight Dr Aung Min Saw Zoe Morrison Leah Brooksbank Linda Shi Jenny Yang Himani Sehgal Lucy McKay

Red Flags of Rare Disease 🚩 Misdiagnosis and Delayed Diagnosis 🚩 For the third in our series highlighting the red flags of rare disease, our ambassador Emily Livesey tells us all about her experience with these red flags and her advice to healthcare professionals. To read the red flags report, you can do so here https://lnkd.in/eGcuYDMU

Last night M4RD’s CEO, Dr Lucy McKay and Comms Lead, Dr Emma Huskinson attended the Communique Awards in London, alongside Chris Edmonds and the talented team at Emotive. The Awards recognise ‘excellence and best practice in medical affairs and healthcare communications’. M4RD was proud to be shortlisted, along with our partners emotive, for the award for ‘Excellence in Pro Bono Working’. The other shortlisted projects were incredible and we were honoured to be considered alongside them. The award was won by Stirred Creative for The Vavengers and we would like to congratulate the team for their fantastic work. Being shortlisted and being able to attend this prestigious industry award was a wonderful recognition to mark five years of hard work between our small charity and emotive. M4RD’s relationship with emotive has evolved and blossomed over the years. The staff and trustees of M4RD are so appreciative of emotive’s sage advice and support. The partnership has seen us go from one to six staff members, with a UK-wide network of passionate M4RD Ambassadors. It has nurtured M4RD allowing the charity to reach goals such as partnering with NHS England, royal colleges, foundation schools and medical schools as well as providing thought leadership on a range of important projects. We look forward to continuing this fantastic relationship and would once again like to say a huge thank you to Chris and the emotive team for being so committed to M4RD. #Medics4RareDiseases #MedicalEducation #ProBono #Communications

Our CEO, Dr Lucy McKay, is speaking at a Westminster Health Forum meeting on 16th July. The speakers will be discussing 'Priorities for rare disease diagnosis, care and treatment in England'. Lucy's focus will be on approaches to workforce education and training about rare disease - with insights from some of our collaborations including: Genomics Education Programme's GeNotes Medscape on its Rare Disease learning platform RareQoL and the Red Flags Survey Rareminds on the Mental Health and Rare Disease Course It's a lot to fit in but we believe in her! 🎟 Book your place now for this online morning meeting 16/07/2024: https://lnkd.in/eRzwVyyR Westminster Forum Projects #WHFEvents #RareDisease

The newly formed #RareCare team are recruiting! * Are you a person or caregiver with lived experience of a rare condition? * Do you have experience in patient-centred research? * Have you taken part in a clinical trial or research study? Or supported someone who has? * Have you helped design or review research activities or healthcare services? * Have you been involved in Patient and Public Involvement, Engagement and Participation (PPIEP) activities? * Have you been part of a research advisory or service group? The newly formed #RareCare Team are recruiting two lived experience people to join their Research Advisory Group (RAG) for a 24-month NIHR (National Institute for Health and Care Research) funded project to measure the impact of England's #RareDisease Action Plans for those living with rare conditions and to advise on improvement. This paid position involves 6-8 online meetings beginning in July 2024, and some reading and reviewing materials at home. 🔎 Learn about the RareCare project - https://lnkd.in/eVq5TRDC 🧾 View the role description - https://lnkd.in/eDBn7xhB ✔️Apply to be considered for the role - https://lnkd.in/eZQ9GgHG