Medics For Rare Disease

Rarely Taught: Reflections on Rare Disease Training Globally
2026-02-11 19:30 - 20:30 (Europe/London) | ONLINE
Connect with healthcare professionals and students from around the world for a dynamic discussion on rare disease medical training across global contexts.
As part of this interactive session, we’ll also deliver a FLASH Rare Disease 101 training showcasing our updated e-learning course – giving you the opportunity to #LearnYourStripes ahead of Rare Disease Day 2026.
📅 Event Details
Date & Time: 11 February 2026, 19:30–20:30 GMT
Location: 💻 Online via Zoom
👉 Register via Eventbrite and receive the Zoom link shortly before the event
🌐 What to Expect
A concise, high-impact Rare Disease 101 teaching session
A shared conversation on learning needs, challenges and opportunities in rare disease medical training
Opportunities to connect with peers worldwide
🎟️ Who should attend?
Open to healthcare professionals and students globally. FREE to attend with optional £10 donation.
Whether you’re looking to expand your knowledge, gain a global perspective, or connect with like-minded colleagues, this event is the perfect way to kick-start your Rare Disease Day 2026 learning.
📌 Save the date and register now!

Moving the WHA Resolution on Rare Diseases Forward: From Promise to Action
2026-01-15 13:30 - 15:00 | ONLINE
Join Rare Diseases International for this public webinar where they will discuss the current status of the WHA Resolution implementation, as they approach the World Health Organization Executive Board meeting taking place in February 2026. This webinar will engage in a multistakeholder dialogue focusing on the necessary path forward to accelerate the implementation of the Resolution and importantly the development of the GAPRD.

King's Health Partners Rare Disease Grand Round: Hepatobiliary disease
2025-11-03 13:00 - 14:00 | ONLINE
Join the upcoming Rare Disease Grand Round, hosted by the King’s Health Partners Rare Disease Network—bringing together researchers and clinicians across the region to foster collaboration, share insights, and advance rare disease research.
This session will focus on hepatobiliary disease, featuring expert talks on cutting-edge research:
Mind over MASLD: Unravelling brain dysfunction in steatotic liver disease – Dr Anna Hadjihambi, Group Lead, UKRI Future Leaders Fellow, King’s College London
Presentation by Prof Philip Newsome, Professor of Hepatology and Director of The Roger Williams Institute of Liver Studies – title to be announced
The event will be chaired by Dr Cristina Dias, Chair of the KHP Rare Disease Network, Clinical Reader in Genomics and Neurodevelopment at King’s College London, and Consultant in Clinical Genetics and Genomics at Guy’s and St Thomas’ NHS Foundation Trust.
Why attend? Connect with the King’s Health Partners research and clinical community, hear from leading experts, and explore the latest developments in rare disease research.
Recording available later on the KHP Learning Hub.

Rare Disease Day 2026: Launch Webinar
2025-10-27 15:00 - 16:00 | ONLINE
Join one of two upcoming webinars on either the 27 or 28 October for a first look at Rare Disease Day 2026! Learn more about the resources which have been created and everything that is available for download to use in your campaign. This webinar is for patient advocates, patient organisations, industry supporters and all stakeholders in the rare disease community.

Ambassador Welcome Brew
2025-10-08 19:30 - 20:00, 2025-09-30 14:30 - 15:00 | ONLINE
A short, casual catch-up for Medics for Rare Disease Ambassadors (cohort 2024/25) starting their second year on the Programme.
These informal sessions allow the Ambassadors to ask questions of the team and each other and to share experiences and challenges to inspire each other!

Introduction to Delphi Studies
2025-07-16 15:00 - 16:00 | ONLINE
Have you ever heard of a Delphi Study and not quite sure what it entails? Or maybe you have never heard of Delphi? This webinar will be providing training on what a Delphi Study is and how they are run. PhD Candidate, Shams Al-Ani, studying Pharmaceutical medicine and regulatory affairs at Centre for Pharmaceutical Medicine Research, King’s College London will be delivering the training through a 45 minute presentation with time for Q+A session afterwards.
Sign up here

Our Voices, Our Stories: Lived Experiences of Genomic Testing
2025-07-15 12:00 - 14:00 | ONLINE
Genomic testing is a complex clinical topic, with new developments and discoveries taking place at a rapid rate. Often, we focus predominantly on the clinical and scientific aspects of genomics, but it’s crucial to remember that each advancement has life-changing impacts on people across the world.
In this webinar, we’ll be exploring the lived experiences of people who have gone through genomic testing, research and diagnosis. Each of the participants you will hear from has a unique and impactful story, and will provide powerful insights into the human side of the genomic testing process. With experiences across cancer and rare disease, from parent carers through to those diagnosed as adults, we’ll be shining a light on the emotions involved in testing, diagnosis and treatment. Not only will you get to hear these compelling stories – you’ll also have the opportunity to ask questions and learn more about the importance of patient and public involvement in genomic testing and research.
The webinar will be co-chaired by two clinical experts in genomics – Dr Hannah Titheradge, Consultant Clinical Geneticist at Birmingham Women’s and Children’s Hospital (BWC), and Emma Douglas, Genetics Clinical Research Practitioner at BWC. Hannah has years of experience working in clinical genetics and is the Rare Disease Lead at BWC, whilst Emma is an expert in genetic research and is currently working towards her PhD on the patient experience of genomic testing.
This session is open to everyone, whether you’re a patient, healthcare professional, or an interested member of the public. If you’ve got lived experience yourself or any questions, you are welcome to share during the Q&A. For healthcare professionals, the session promises to provide you with a better understanding of the crucial patient perspective to better support those in your clinic.
If you have any queries about the event, please get in touch. If you’ve got any accessibility requirements, please let us know during the registration process.
And if you’re interested but aren’t able to attend on the date itself, make sure to still register and we will send you the recording after the event has taken place!
You can sign up here

Genomics in Primary Care: What GPs need to know
2025-06-12 12:00 - 14:00 | ONLINE
Genomic medicine has a significant impact within the field of primary care. Generally acting as the gateway to the NHS and specialised services, primary care practitioners are crucial in the early identification of genetic conditions and in ensuring appropriate management of a range of conditions.
Genomics features in everyday primary care practice in a range of ways:
* Rare diseases are individually rare but collectively affect 1:17 families. GPs may have a caseload with a number of patients with the same rare disease within a family.
* Most care for patients with genetic conditions is provided in the community. A patient’s genetic condition might influence your choice of commonly prescribed medications such as HRT or contraceptives.
* Some common conditions have genetic susceptibility. Clinical Genetics only see the patients that GPs refer to them. As a GP you are in a unique position to suspect these diagnoses early and refer appropriately.
* Patients with inherited cancer predisposition syndromes need regular screening to find cancer early and improve prognosis. You can encourage them to attend for this.
* GPs can give preconception advice for families with known genetic conditions and encourage relatives to be tested to benefit from additional screening/treatment.
* Genes influence the way that our bodies process medication. As more research emerges, genetics is likely to influence our approach to prescribing in the future. This is already being seen in the prescription of clopidogrel to patients who have had a stroke.
In this informative webinar, we’ll hear from a range of experts – from patients through to healthcare professionals – to examine the application of genomics within primary care and how it relates to your role.
Register now to secure your place here, and don’t hesitate to get in touch if you have any questions.

Rare Disease 101 for Rare Disease Day 2025!
2025-02-25 19:00 - 21:00 | ONLINE
Medics for Rare Disease: Rare Disease 101 for Rare Disease Day 2025!
Join us this Rare Disease Day for an engaging and impactful Rare Disease 101 online training session, reimagined with updated content and a fresh new look ✨.
Rare disease affects 350 million people worldwide, yet remains underrepresented in medical education. This session is designed to bridge that gap by approaching rare disease as a single discipline, highlighting the common challenges experienced by impacted people and discussing how to make a difference 💡.
Why attend?
🧠 Gain insights into the fundamentals of rare disease and learn how every healthcare professional can make a difference.
💬 Hear from the winner of the Student Voice Prize 2024 – more details to be revealed!
👂 Listen to powerful reflections from a lived-experience advocate, offering invaluable understanding of what it’s like to navigate the healthcare system with a rare condition.
This session is perfect for doctors, nurses, and other healthcare professionals, but it’s open to everyone worldwide, so don’t miss the opportunity to expand your knowledge and be part of the global conversation on rare disease. 🌍
➡️ Secure your spot today! The first 25 sign-ups will receive a NEW rebranded Medics for Rare Disease pin badge – perfect for showing others that you’re Rare Aware!
Medics for Rare Disease understands that some people may experience barriers to paid attendance. We have therefore reserved a number of FREE general admission tickets. Email helen@m4rd.org to receive the relevant promo code.
Find out more about Medics for Rare Disease at m4rd.org and take our free e-learning modules at learn.m4rd.org! 🎓

Misdiagnosis and surgical uncertainty - A patient's perspective
2024-09-25 19:30 - 21:00
Charlotte Cuffe is a CAUK member and her patient story was recently featured in a prestigious global essay competition after she was interviewed by 5th Year Medical Student, Iman Muzafar. Join us to hear Charlotte and Iman in conversation about misdiagnosis and surgical uncertainty. To read Iman’s award-winning essay published in Springer Nature go to https://communities.springernature.com/posts/student-voice-prize-runner-up
This is the registration link for the event: https://us06web.zoom.us/webinar/register/WN_GNz8TK1lQN-wUqrXDtaXKQ#/registration

Beyond the Student Voice Prize
2024-03-13 19:00 - 20:30 | ONLINE
Join us to celebrate the end of another highly successful Student Voice Prize.
This year’s competition saw more entries than ever before from 30 different universities across 18 countries. We are so grateful to the students and patient groups who contributed to this success.
This event is an opportunity for us to share these achievements and showcase some inspiring case studies. We will also highlight opportunities for students to continue their involvement in rare diseases going forward.
We hope that for many students this competition has marked the beginning of a continued interest in rare diseases that could span their career and make a real difference to the lives of people living with rare conditions.

Who is this event for?

Medical and science students who have entered The Student Voice Prize in the past or would be interested to in the future
Medical and science students interested in learning more about rare conditions and getting involved in the community
Rare disease patient group leaders interested in SVP, even if you haven’t been involved in the past

During this event you will:

Hear stories from rare disease patients and advocates
Connect with students and the rare disease community
Hear from 2023 competition winners
Learn about opportunities to get involved with rare diseases going forward

Spaces are limited, don’t wait to claim your free ticket!

Building NHS healthcare professional awareness resources
2024-01-26 14:00 - 15:30 | ONLINE
Come along to learn more about how your voice can help healthcare professionals learn about rare disease. You will be joined by Kate Tatton-Brown and Alison Pope, Clinical Directors at NHS England, as they present the Genomics Education Programme and why it’s important.
Please find the link to the zoom webinar here: https://us06web.zoom.us/j/84487083787
We would greatly value your participation and would very much appreciate if you could let us know by Friday 5th January if you accept this invitation.
If you have any questions, please do not hesitate to contact Nadine at nadine@m4rd.org

Living with Uncertainty & Impact of Trauma Mental Wellbeing Webinar
2023-09-06 14:00 - 16:00 | ONLINE
People affected by a rare and undiagnosed condition live with an accumulative impact on their mental wellbeing. Specifically at an individual level, people living with a rare disease (PLWRD) can have an associated mental health co-morbidity, and at a population level, the community live with the increased psychological impact associated with the rare disease journey across all stages of life. Furthermore, the rare disease community has increased exposure to social inequality and discrimination, which are risk factors affecting poor mental wellbeing. The rare disease community has identified the need to look beyond the physiological symptoms of a rare condition, and recognise the importance of psychological support as a fully integrated part of the coordination of care. Without support, there will continue to be a detrimental impact on the mental health of those affected by rare conditions, hindering them from effective participation in society.
This webinar will begin by breaking down the biopsychosocial continuum and addressing the intersectional needs of our community. It will then move on to a panel discussion on living with uncertainty and the impact of trauma, ending with a discussion on the impact of living with congential malformations.
The outcome of the webinar will be the launch of a public call for expressions of interest to join the new EURORDIS Mental Wellbeing Partnership Network, where patient representatives will partner with experts to identify common mental health needs and inform EURORDIS’ strategic and policy action.

Beyond the clinic: Sickle Cell Disease
2023-07-31 17:00 - 18:00 | The Royal Society of Medicine
This webinar continues a new series of webinars that highlights the lived experiences behind genetic conditions. In an effort to highlight experts outside of the medical field the Medical Genetics Section will be using its platform to allow people with lived experience and other stakeholders to provide insight into genetic conditions, that are usually taught from a biomedical perspective.
This meeting focuses on Sickle Cell Disease, the most common rare genetic condition in the UK. Despite this fact people with Sickle Cell Disease still have considerable unmet needs including lack of access to treatment and investment in research. The treatment of patients with Sickle Cell Disease has also made news headlines in recent times due to failings in the health system. In this meeting we will hear from advocates in this area to understand the needs of patients and how we can better serve this community.
We will also hear from contributors to The No-One’s Listening report published by The Sickle Cell Society and The All Party Parliamentary Group for Sickle Cell and Thalassaemia.
This meeting aims to:

Raise awareness of how Sickle Cell Disease impacts families and communities
Highlight the unmet needs of patients living with Sickle Cell Disease
Learn from the outcomes of The No-one’s Listening Report

This is an online event

RSE Network Support Meeting
2023-03-17 - 2023-03-18 | ONLINE
Rett syndrome is a rare, genetic, neurological disorder affecting mainly females (1:10,000) and very few males. It is present from conception. After a period of ‘near normal’ development, the child experiences a regression in key skills, usually mobility, speech and hand use between the ages of one and two years. The child may appear very withdrawn during this stage and this often leads to a misdiagnosis of being on the autistic spectrum. Multiple comorbidities appear post regression including epilepsy, breathing disruption, scoliosis, gut and bowel problems. Whilst the disorder is genetic, in the majority of cases it is not inherited. Rett syndrome is usually caused by a fault on a gene called MECP2 which is found on the X chromosome. People with Rett syndrome have profound and multiple physical and learning disabilities. They are totally reliant on others for support throughout their lives, yet they are radiating love and enjoying their life to the fullest.
We are delighted that registration is now open for the Rett Syndrome Europe Network Support and Research Event. Many thanks to our funders The European Joint Programme for Rare Diseases Network Support Scheme and our sponsors Anavex, Taysha, Neurogene and Neuren for making this possible.
The main meeting is in Budapest, Hungary with satellite meetings in the UK, Netherlands, Serbia, Georgia, Croatia and Turkey. The ‘in person’ satellite meetings are by invitation only but anyone can register to view the presentations which are being shown on 17/18 March 2023. They will also be available post event to view at a time of your choosing.
We have a limited number of places for people to attend the satellite meeting at The Angela Ruskin University, Cambridge in person. It is free including lunch both days and dinner on the Friday evening. If you are interested in this opportunity to meet and network with several experienced Rett researchers and clinicians, please email bjenner@rettsyndrome.eu

Beyond the Student Voice Prize
2023-02-28 19:00 - 20:30 | LIVE STREAM
The Student Voice Prize is delighted to invite you to our second annual virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get involved and continue your advocacy.
What can you expect?
The event will be an informal opportunity for you to meet fellow entrants to the competition, connect with patient group advocates and hear from those working actively in rare diseases. There will be a series of short inspiring presentations from a cross-section of individuals as well as handy guidance for getting more involved with the rare disease community and building a focus on rare into your career.
Who is this event for?

Previous entrants of the Student Voice Prize
Prospective entrants of the Student Voice Prize
Medical students interested in learning more about rare conditions and getting involved in the community
Rare disease patient group leaders who have been involved in the Student Voice Prize in the past
Rare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!

Why should you attend?
Rare diseases are collectively common, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions.
Rare diseases are gaining increasing momentum as pressing health priorities worldwide, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change, raise awareness and drive your own personal development.
The Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students, nurses and scientists who want to engage with patients from across the medical spectrum, particularly in rare disease. This is your chance to go beyond and become an advocate for a large, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.
———————————————————————————————–
The Student Voice Prize is a project run in collaboration by Medics4RareDiseases (Charity No 1183996) and Beacon (Charity No 1149646)

Conducting rare disease research in the context of clinical care
2023-02-28 11:00 - 13:00 | ONLINE
11.00 am Introduction and welcome Tony Lockett (CPMR London)
11.05 am Dr Lucy McKay (Medics for rare diseases)- Can Medical Education
Help in the Conduct of Research in Rare Diseases?
11.30 am Dr Robin Lachman (University College London) – Does
Evidence-based Medicine Work for Rare Diseases?
12.00 pm Fleur Chandler (Sanofi) Putting it into perspective, a view from
both sides for evidence generation in rare paediatric conditions
Join the meeting here

Shining a Light on Silver-Russell Syndrome (SRS) on Rare Disease Day
2023-02-22 18:00 - 19:30 | ONLINE
Join us for this ONLINE event on Rare Disease Day 2023, find out about how rare genetic conditions, like SRS, are diagnosed and hear about what it’s like to live with Silver-Russell syndrome (SRS).

Featuring

Gracie Taylor, Patient Voice (& Science Insights Alumni)
Prof Mary Porteous, SE Scotland Rare Disease Diagnostic Service
Dr Emma Wakeling, Clinical Genetics and Genomics Consultant, Great Ormond Street Hospital & Medical Advisor to Child Growth Foundation
Jeff Bolton, Chair, Child Growth Foundation

Young People’s Genomics Café
2022-10-20 18:00 - 19:30 | LIVE STREAM
Are you a young person interested in finding out more about genomics and health, or affected by a rare or genetic condition?
Chromosomes!
Dr Andrew Fry, Clinical Senior Lecturer in Medical Genetics, Cardiff University
An Introduction to Pharmacogenomics
Sophie Harding, Pharmacogenomics Lead, Royal Pharmaceutical Society of GB
Medics4Rare Diseases
Lucy McKay, CEO Medics4RareDiseases
Everyone is welcome to this FREE online event.
Register for Virtual Café: https://tinyurl.com/34ehzs74

Facing up to the genomic gap: Tackling equality and diversity in genomics on
2022-07-07 17:30 - 18:30 | LIVE STREAM
This webinar is part of the popular Genetics of webinar series and will discuss the challenge of equality and diversity in genomic research and clinical settings and strategies to address this.
Genomic research has traditionally been focused on caucasian populations, which leads to inherent biases in genomic findings translated into clinical research. Underrepresentation of other populations in genomic datasets and biobanking endeavours leads to genomic medicine services being underutilized and inaccessible to these communities.
During this webinar you will:

Understand that genomic data is under-representative of many minority populations which has a direct impact on genomic research
Develop an idea of how the scientific community is trying to address this issue
Appreciate the challenges of ensuring that diverse communities are able to access the genomic medicine service
Describe strategies that are being undertaken to try and improve genomic testing provision within diverse communities

The genetics of intellectual disability: Episode 15
2022-06-13 17:30 - 18:30 | LIVE STREAM
This webinar is part of the popular Genetics of webinar series and will provide an interesting update on the genetic origins of intellectual disability, as well as explore what challenges remain in this area.
Our speakers will explore what research is required after a genetic diagnosis of intellectual disability and what families would value the most from the diagnostic experience. This webinar is also a special chance to discuss what the experience of receiving a genetic diagnosis is like for patients and their families.
During this webinar you will:

Understand what we do know about the genetic origin of intellectual disabilities
Appreciate the challenges and opportunities in research in this field
Recognise how post-diagnostic research is important in order to understand the different ways people experience intellectual disability
Value the insights gained from those who have received a genetic diagnosis of intellectual disability

This meeting is in association with the RSM Intellectual Disability Section.
The genetics of… series has been developed following feedback from delegates. Presented by the Medical Genetics section of the Royal Society of Medicine, this series of talks will focus on the role of genetics in different areas of health and wellbeing.

Understanding Rare Disease: Communicating with Patients
2022-06-08 14:00 - 15:30
Sign up to learn about the role of communication in rare disease from those affected directly, in an interactive FREE virtual event!
About this event
The event will kick off with a session from our guest speaker, who will explore the value of effective and sensitive communication skills when it comes to handling complex conditions, such as rare disease. Attendees will then have the chance to speak directly with some of the I am Number 17 campaign changemakers and hear first-hand about how their diagnostic odysseys came to an end, through perseverance and working together with the help of their HCP/Consultants.
What will you get from attending this event?
• Gain experience from communicating directly with those affected by rare disease
• Improve your understanding of rare disease and how to react when faced with a potential rare disease
• Develop your communication skills (notability how to share sensitive information and break bad news)
• Gain a certificate of attendance to exhibit your enhanced learning
We hope that learning from real-life examples will provide you with tangible learnings to take along your medical careers and ultimately equip you to Find the 1 in 17 in the future…
All medical students are welcome to attend the event!
Please note this event may be beneficial for students preparing for upcoming OSCE examinations.
We look forward to seeing you there and learning together!
This event is initiated and funded by Takeda UK, run together with Medics4RareDisease.

Online workshop: Understanding access and reimbursement
2022-05-17 - 2022-05-19 | ONLINE
Getting wider access to drugs for as many patients a possible is a clear priority in the drug development process, especially for patient groups who are working to secure research into and treatments for their rare conditions.
However, understanding how to secure access to newly developed treatments is an often-neglected challenge. The processes involved in securing reimbursement can be intimidating to patient groups and act as a real barrier to engagement.
This workshop will outline the basics of access and reimbursement: what it means, when it happens, and who is involved. It will also explore the key ways in which patient groups can contribute to the process and what should they be prepared for. Attendees will leave feeling more confident in what the access and reimbursement process involves and where they can add value.
Day one: Access and reimbursement 101, back to basics
Day two: Understanding the NICE appraisal process
Day three: where can patient groups get involved?

Beyond the Student Voice Prize: Continuing your involvement in rare disease
2022-02-28 18:30 - 20:00 | ONLINE
Learn how you can further your interest and get more involved in the world of rare diseases to benefit both yourself and the rare community

The Student Voice Prize is delighted to invite you to our virtual rare disease day event ‘Beyond the Student Voice Prize;’ an opportunity to connect with peers and patient group leaders to learn more about the rare community and how you can get further involved.
The event will be an informal opportunity for you to meet new people and share your experiences of the rare disease community and entering the Student Voice Prize. You’ll also learn how you can build on your current knowledge to drive your personal and professional development whilst helping those in the rare disease community.
Who is this event for?

Previous entrants of the Student Voice Prize
Medical students interested in learning more about rare conditions and getting involved in the community
Rare disease patient group leaders who have been involved in the Student Voice Prize in the past
Rare Disease patient group leaders who haven’t been involved in the Student Voice Prize in the past- all are welcome!

Why should you attend?

Rare diseases are collectively common, meaning you are likely to come across them in one form or other in your medical career. Learning about them early can better prepare you as a future clinician and can ensure better outcomes for individuals diagnosed and living with rare conditions.
Rare diseases are gaining increasing momentum as pressing health priorities worldwide, compounded by advances such as the first-ever UN Resolution on persons with rare diseases and the new UK Rare Diseases Framework. There has never been a better time to get involved with the rare disease community to help create change, raise awareness and drive your own personal development.

The Student Voice Prize is much more than just a competition. It has proven itself to be a gateway for many medical students, nurses and scientists who want to engage with patients from across the medical spectrum, particularly in rare disease. This is your chance to go beyond and become an advocate for a large, but poorly represented community and help make a real difference in the lives of rare disease patients and their families.

Lessons learned from the COVID-19 pandemic: Looking to the future with The UK Rare Diseases Framework
2022-02-22 18:00 - 20:30 | ONLINE
Jointly organised with ARDEnt, this webinar will discuss the recommendations the ARDEnt team is using to help inform how the UK is going to deliver its objectives set out in the UK Rare Diseases Framework, published in January 2021.
The webinar panel includes members of ARDEnt and those responsible for overseeing the impact of the Framework in the UK.
Read about these recommendations in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team’s research.
CPD learning applied.
This webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1 to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.
This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.

Lessons learned from the COVID-19 pandemic: Clinical trials and drug development in rare disease
2022-02-15 18:00 - 20:30 | ONLINE
This episode refers to theme 3 in the Making The Unseen Seen: Rare disease and lessons learned from the pandemic report and will discuss how safety considerations, travel restrictions, shielding, trial-sites being repurposed to COVID-19 wards, research staff either being called to the front- line or called to replace others who were, have compounded the already fragile world of clinical development for rare diseases.
Read Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team’s research.
CPD learning applied.
This webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1 to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.
This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.

The Unusual Suspects: rare disease in everyday medicine
2022-02-09 18:00 - 20:00 | LIVE STREAM
The Unusual Suspects: Rare disease in everyday medicine is returning to The Royal Society of Medicine on 9th February!
The M4RD Annual Symposium has been a popular event in the rare disease calendar for many years, allowing healthcare professionals at all levels, trainees and students to come together to learn more about the importance of understanding rare diseases as a whole, with a large focus on improving awareness and management.
Following the success of last year’s online event, we will be live streaming from 1 Wimpole Street.
This is the only medical meeting of its type in the UK that brings together stakeholders from across all sectors and rare diseases in order to teach those who don’t yet know much about rare disease.We will be hearing from patients, parents, advocates and clinicians.
BOOK NOW

Lessons learned from the COVID-19 pandemic: Rare disease health and social care coordination
2022-02-08 18:30 - 20:00 | ONLINE
During times of global disruption, it is often those who are already disadvantaged that are disproportionately affected. Theme 2 of the ARDEnt report highlights this impact on those with rare conditions.
Jointly organised with ARDEnt, this webinar will examine how the reduction to healthcare, social services and SEND (special educational needs and disabilities) education has had a devastating impact that will be felt long after COVID-19 restrictions are lifted.
As the world begins to find its new normal we must ensure we are “making the unseen seen”.
Read Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team’s research.
CPD learning applied.
This webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1, to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.
This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.

Lessons learned from the COVID-19 pandemic: Diagnostic delay in rare disease
2022-02-01 18:30 - 20:00 | ONLINE
This time last year it became clear to the rare disease community that the COVID-19 pandemic was having a disproportionate and often devastating effect on all aspects of the lives of those living with rare conditions.
To remediate this, a large group of UK-based and cross-sector stakeholders, known as ARDEnt, assembled to ensure the capture and analysis of what was truly happening to the fragile rare disease infrastructure.
Jointly organised with ARDEnt, this webinar will examine how the diagnostic process in rare diseases was affected by the response to the COVID-19 pandemic.
The journey to a rare diagnosis is already recognised as a long and arduous process and has been coined the ‘Diagnostic Odyssey’. The ARDEnt team found that diagnostic delay has been further exacerbated during the pandemic and the consequences of this will be felt for years to come as the population of people living with an undiagnosed rare disease will have grown bigger in 2020.
Read Making The Unseen Seen: Rare disease and lessons learned from the pandemic report to find out more on this episode, the series, and the ARDEnt Team’s research.
CPD learning applied.
This webinar is part of the ‘Lessons learned from the COVID-19 pandemic’ series, a series that will cover all themes outlined in the Making The Unseen Seen report, from diagnostic delay in episode 1, to health and social care in episode 2, clinical trials and drug development in episode 3, and concluding with the UK Rare Diseases Framework and action plans in episode 4.
This webinar is available for on-demand viewing. The webinar recording will be available for registered delegates up to 30 days after the live webinar broadcast via Zoom. The link will be sent 24 hours after the webinar takes place.
