Patient partnerships: Improving healthcare equality from pandemic to endemic
2022-10-29 13:00 - 16:00 (Europe/London) | LIVE STREAM
The purpose of this event is to promote partnerships between patients and the medical profession to pave the way for a better, more inclusive healthcare system as we rebuild after the pandemic. By strengthening this relationship, we aim to ensure patients never feel isolated when they are at their most vulnerable. We will discuss real-life examples of partnerships and their successes.
There will be a series of presentations and workshops by students and experienced professionals on non-technical aspects of medical practice, such as political challenges with the public health service and humanitarian values. The event will end with a prize-giving ceremony for the Dr Edwin Doubleday essay award, which funds medical students aspiring to improve the relationship between patients and the medical profession.
Aims of the event:

To highlight the role and importance of patient partnerships
To educate the medics of tomorrow about non-technical aspects of practice
To inspire attendees to improve the relationship between patients and the medical profession
To give attendees the chance to improve their presentation and networking skills

This event is run in association with the University of Manchester Doubleday Centre and the Doubleday Medical Schools Patient Partnership Collaboration.
Students are invited to submit an essay using this link below to enter the Doubleday Student Prize.

Understanding ME/CFS, symptom crossover with hEDS/HSD and implications for Long Covid
2022-11-18 09:00 - 12:00 | LIVE STREAM
Dr Sue Pemberton PhD is a qualified occupational therapist who was involved in setting up the Leeds based Chronic Fatigue Syndrome Service in 1990, one of the first NHS clinics specifically for the condition. She wrote the original therapy programme and worked clinically with the service for over 22 years, in addition to holding a number of management positions within the NHS.
Sue has co-authored the self-help manual Fighting Fatigue: a practical guide to managing the symptoms of CFS/ME, Hammersmith Press and contributed to the British Association for CFS/ME Therapists Manual.
Sue will explore the implications of Chronic Fatigue Syndrome and Long Covid

Get Started with Genomics CPD Course
2022-11-24 - 2022-11-25 | University of Exeter, St Luke's Campus, Heavitree Road, Exeter, EX1 2LU, United Kingdom
The implementation of next-generation sequencing technologies has enabled genomics to become a mainstream subject in medicine. The UK has now adopted Whole Genome Sequencing (WGS) in clinical practice, and the use of genomic sequencing technologies in healthcare has become widespread across many countries. Healthcare professionals across the world need the skills to understand genomics and what it means for their patients.
This course will provide participants with the basic principles of genomic medicine. The content will include the distinction between genetics and genomics and a focus on understanding the different modes of inheritance. With a focus on practical case studies and a workshop-style of delivery, the course will offer the opportunity to engage with academics and fellow participants and build collaborative networks.
Course Leads
Professor Anna Murray – Associate Professor in Human Genetics
Dr Julia Baptista – Lecturer in Clinical Education
See the Speakers page for the full faculty list.
Delivery Dates and Format
The course will be delivered on 24th and 25th Nov 2022 in a hybrid format (virtually and in-person at the University of Exeter)
Who is it for?
The course is aimed at clinicians and other healthcare professionals who need an introductory course in genomics. This course would be an ideal access course for those wishing to pursue further studies, in particular the MSc in Genomic Medicine.
Learning Outcomes
At the end of the course the learner will be expected to be able to:

Define the key concepts of genetics and genomics
Understand the main approaches to genomic testing and principles of variant classification
Understand the main modes of inheritance in humans (autosomal dominant, autosomal recessive, X-linked, and mitochondrial) and recognise their characteristic features and patterns
Understand that genetic disorders might be inherited from an affected parent, an unaffected parent, both unaffected parents or arise spontaneously
Apply the knowledge of mode of inheritance in the context of a clinical report and the given family scenario
Become familiar with the basics of genome browsers to view gene information and interpret genomic information in clinical reports

Certificate and Accreditation
Participants will receive a certificate of participation including both CPD points applied for through the Royal College of Physicians and learning outcomes, which can be used towards your own professional development.
For more details about the course including fees and delivery see the course details page.

RAREfest22: Educate, Engage, Empower
2022-11-26 | The Guildhall, Market Square, Cambridge, CB2 3QB
FREE to attend, RAREfest22 is a public-facing, rare disease inspired festival featuring interactive talks, demos and exhibits, film and art showcasing ground-breaking science, visionary technology and pioneering organisations improving lives and bringing hope to those living with rare conditions.
An award-winning festival that is as UNIQUE as the patients it champions. Featuring the brightest minds in rare disease research, the innovators of life-changing tech, the pioneers in rare disease medicine, and the patients whose powerful voices must be heard. For the experts. For the curious. For everyone. For FREE.
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 toward s better diagnosis, treatment and support for patients and their families is smoother and more certain.
Book now

Advances in renal genetics
2022-12-08 | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
Attend this meeting for a comprehensive update on the clinical management of genetic and inherited kidney diseases, including cystic and basement membrane disorders, podocytopathies and tubulopathies, in both children and adults.
We will review the evolution of new genomic methodologies, including how they are informing our knowledge of kidney disease pathogenesis and outcomes, and their potential impact on patient care in the future.
Aims of the event include:

To describe recent developments in the management of inherited kidney diseases
To consider the present and future impacts of novel genomic approaches in nephrology
To explore the development of local and national genetic services in the NHS

Book to attend this event in person or virtually. To view the rates and agenda, please select your preference below.

The Unusual Suspects: rare disease in everyday medicine
2023-02-15 12:30 - 18:00 | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
We are delighted to announce our 10th annual symposium and, for the first time since 2020, it’s returning live and in-person!
SAVE THE DATE… Join us on Wednesday 15th February 2023 at 1 Wimpole Street for M4RD’s annual symposium ‘The Unusual Suspects: rare disease in everyday medicine’.
The Unusual Suspects 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 and the lived patient experience.
Following our online symposiums in 2021 and 2022, we are excited to be back in London hosting this event from the home of the Royal Society of Medicine, in the Wheatley Room. The theme this year will be on mental health and will follow the launch of our new MH module being launched on M4RD Learn in 2023.
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 hear from patients, parents, advocates and clinicians.
This event will also be available to live stream if you are unable to join us in person.
Click here for more details, including our programme and how to register.

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

BPSU Annual Symposium
2023-02-28 | RCPCH Council Chambers, 5-11 Theobald's Road, London, WC1X 8SH, United Kingdom
The BPSU is currently planning to hold its yearly Symposium on rare diseases on 18th October 2022 and are in the process of compiling an agenda for the day, which will take place at the RCPCH council chambers on 13th October 2022.
Join the BPSU, NHS clinicians, and patient groups for what is looking to be an informative event which will acknowledge the current work conducted on rare diseases in children and raising awareness of such.
For more information email Charlotte Lewis

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

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.
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The Student Voice Prize is a project run in collaboration by Medics4RareDiseases (Charity No 1183996) and Beacon (Charity No 1149646)

Reframing Rare Disease
2023-03-06 18:00 - 19:30 | Clare College Medical and Veterinary Society
It may be impossible for all doctors to have knowledge of more than 7,000 recognised rare diseases. However, it is feasible for all future and current medical professionals to learn when to suspect a rare disease, to appreciate that rare diseases are collectively common and to recognise the exceptional challenges faced by those affected.
At this FREE event, you can expect to learn about rare disease from those with lived experience and from those working in this area in healthcare. Join Medics 4 Rare Diseases (M4RD) and the Clare College Medical and Veterinary Society in equipping medical students and doctors with the knowledge and tools they need to #DareToThinkRare.
Perfect for medical professionals and students wanting to learn more about and get involved in Rare Diseases.
Book Now

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

SFGH Global Health Conference
2023-03-25 - 2023-03-26 | Manchester Royal Infirmary
Students for Global Health is excited to announce that our Annual Global Health Conference which will be held in Manchester over the weekend of March 25th-26th!
Students for Global Health is an organisation, network and community. In our 20 year history, we have evolved into the leading student voice for health, representing students who are passionate about creating a fair and just world in which equity in health is a reality for all.
This conference is open to all students and graduates with an interest in global health, as well as international students. This is an excellent opportunity for you to meet with like-minded individuals, network with professionals in the field, and gain valuable insights and knowledge on the latest developments in global health.
We will have speakers covering topics ranging from deconstructing colonial narratives within medicine and health to adolescent global health.
There is also an opportunity for those who have undertaken research or electives abroad to submit and present an abstract on any topic related to global or public health. Link to submit an abstract: https://forms.gle/VaFcSJkpQRovHMuW6
Transport and accomodation funding may also be available! For any queries regarding this, please contact director@studentsforglobalhealth.org
We look forward to welcoming you all!

Aims Meeting
2023-04-13 - 2023-04-16
AIMS Meeting [Annual International (bio)Medical Students Meeting] is the largest biomedical conference in Europe organized entirely by medical students, gathering each year over a thousand participants from all the world.
It is held annually in Lisboa, Portugal and is advocated by the Faculty of Medicine of the Lisbon Students’ Local Committee.
AIMS Meeting highlights the importance of medical education for all students of health sciences through a diverse approach and is a platform to build bridges between biomedical students around the world.
March of 2022 was marked by the one of the more ambitious editions of the AIMS Meeting so far! In 2023, we are aiming even higher.
The registration process for the AIMS Meeting 2023 is now open!
Don’t miss this oportunity to participate in the largest Biomedical meeting in Europe organized by students! You can attend in person or register to watch online.
If you have any questions, contact us at support@aimsmeeting.org.

3rd International Conference on Lysosomal Diseases
2023-04-20 - 2023-04-21
We are close to our “3rd International Conference on Lysosomal Diseases” which takes place 20-21 April 2023, in London, UK.
The conference is offering 35% DISCOUNT on registration fee to students and fellows.
Here is the link for the programme https://med-lysosomal.com/congress-agenda/
The abstract submission is open via the link https://med-lysosomal.com/abstracts/
Please contact Rosemarie to receive the discount code for registration – rosemarie@bioevents-congress.com

LinkAGE Webinar: Repurposing drugs for rare disease
2023-04-20 17:30 - 19:00
Following on from the first three Genomics Education Programme webinars in the LinkAGE series, the next talk followed by a live Q&A will be broadcast on Thursday 20 April at 5:30pm.
In this pre-recorded webinar, Dr Hassan Shakeel will describe his work repurposing drugs for rare disease. This culminated in an algorithm that can screen clinically approved drugs for trial use in rare developmental disorders.
Find out more about the webinar on the GEP event page. Receive a link to watch this exciting talk and join the Q&A by completing the registration form.

Women in Healthcare: 3rd Annual Conference: Beyond the Ward
2023-04-29 09:00 - 16:30 | ONLINE
Some more info we share for advertising:
Are you a medical student or doctor who is interested in exploring unconventional career paths in medicine? Then we have the perfect event for you! BL Women In Healthcare proudly presents our 3rd Annual Conference: Beyond the Ward.
This year’s conference will take place online on Saturday, 29th April 2023, from 9.00am to 4.30pm. You will have the opportunity to hear from inspiring speakers who have pursued various career paths in medicine, including MedTech, humanitarian medicine, expedition medicine, medical education, and more. We will also be holding interactive workshops geared towards portfolio building.
The conference is open to all, so don’t miss out on this amazing opportunity to learn about exciting new career paths and network with like-minded individuals.
Some of the highlights of the conference include speakers talking about their experiences in MedTech and AI, the NHS Clinical Entrepreneurship Programme, MSF (Doctors Without Borders), expedition medicine, workshops about the Specialised Foundation Programme and leadership in medical school, and so much more.
All ticket proceeds will be going to a local charity supporting women. Tickets are available here: https://www.qmsu.org/ents/event/18671/

This event is definitely not one to miss!

NHS East Genomics Showcase
2023-05-04 09:00 - 16:00 | Kingsgate Conference Centre
On Thursday 4th May 2023 NHS East Genomics will be holding an in-person Showcase event at the Kingsgate Conference Centre, Peterborough.
As well as celebrating successes from their transformation projects across a range of cancers, rare diseases and conditions, plus how they are helping to support and develop their local NHS workforce, delegates will also benefit from networking opportunities through their interactive ‘Marketplace’, hearing from expert guest speakers – including first-hand patient stories – and learning more about:
how they are working with partners to increase awareness of, and access to genomics and genetic testing
their work to reduce health inequalities and improve equity of access to genomic medicine
specific work on a range of cancer and rare disease pathways
awareness raising, community engagement, screening and earlier diagnosis to improve detection rates and patient outcomes
how they are representing the public and patient voice
how they are supporting their local NHS workforce to embed genomic medicine
the road ahead: what’s next for genomics in the region?
Please note this event will be in-person only, with no virtual joining option.

Living Rare Forum
2023-05-06 | Renaissance Downtown Hotel, Washington DC
Hosted at the Renaissance Downtown Hotel, the rare disease community will come together in Washington DC for a day of learning, networking and fun! Hear real stories from the community and gain practical knowledge to help you live your best life while navigating your rare disease journey.
The living rare forum is your opportunity to connect with others in the rare disease community.
By attending, you will have access to:

Sessions on valuable topics, such as: Finding and Living Your New Normal with a Rare Disease, Drug Development for Rare Diseases, Rare Breakthroughs: Now and On the Horizon, and more.
An opportunity to connect with fellow community members at the Friday welcome reception and Saturday breakfast.
Hot topic discussion lunch tables.
Event swag! Register by April 1st to be guaranteed a t-shirt.

Can’t attend in person? You can also attend virtually!
To book or to learn more about this event, visit their site.

Patient Centricity and Engagement
2023-05-10
29 Industry Leaders From Pharma, Advocacy Groups & Patients Themselves Share Their Latest Insights Into Driving Forward Patient Engagement Through Embedded Partnerships In Just One Day!

Advanced, High-Impact, Value-Adding Strategies For Patient Centricity, Engagement & Partnerships

Drive End-To-End Patient Engagement & Break Through Longstanding Barriers To Patient Centricity – Effectively Collaborate With Advocacy Groups & Stakeholders To Focus Around The Patient & Their Needs – Embed D&I At The Heart Of Engagement Strategies – Deliver High-Impact Patient Experiences & Digital & Virtual Engagement
Website

EDIRA Conference: An Inclusive conference about Inclusion
2023-05-12 - 2023-05-19 | Edira Conference 2023
Theme: Diversity- Dialogue and Development!
In May, the United Nations ‘World Day for Promoting Cultural Diversity for Dialogue and Development’ will be taking place. This day will raise awareness about the essential role that intercultural dialogue has, in bringing positive change. This theme has underpinned the development of the EDIRA conference.
The ultimate aim of the EDIRA project is to co-create an inclusive research framework, which will provide practical guidance for practitioners.
Equality, Diversity and Inclusive Research Association (EDIRA) Conference.
(Greenwich Mean Time: the conference will be held in English).
In person in Cardiff, Wales on 11.30am 12th May 2023.
On-line on 11.30am 19th May 2023. (FREE to members of the Community Network).

In-person event: https://www.eventbrite.co.uk/e/edira-conference-in-person-edira-campaign-launch-party-tickets-521189250077
Online event: https://www.eventbrite.co.uk/e/565518319517

Pint of Science Festival
2023-05-22 07:30 - 21:30
Our Rare Mind and Rare Body events for the International Pint of Science Festival are now live!
Join us for engaging research talks and interactive activities in the pub with leading Cambridge experts on May 22 and 24.
To view the full programme click here

Journal Club: On the 12th Day of Christmas, a statistician said to me...
2023-06-23 15:00 - 17:00 | ONLINE
The month’s leading up to Christmas are a magical time for medical research. The impending holiday season creates a dynamic upsurge in productivity, with researchers finding time to finish off statistical analyses, draft manuscripts and respond to reviewers comments. This activity leads to a plethora of submissions to journals such as The BMJ in December, so that researches can finish the year with a sense of academic achievement and enjoy the festivities with their loves ones.
In this talk, Professor Richard Riley will discuss 12 of the most common issues enountered during a statistical peer review at The BMJ, as identified by a survey of our statistical editors.
The topics will be presented with real examples and the talk is aimed as a broad audience, aiming to shine a Christmas star towards better statistical practice.
You can register for the event Here

Rare @ Manchester - 1st Anniversary Celebration Event
2023-07-19 12:30 - 15:00 | Citylabs 1.0 Nelson Street Manchester M13 9NQ
We are thrilled to invite you to this special event to mark the one-year anniversary of the Manchester Rare Conditions Centre.
This event will highlight the significant strides Manchester has made in improving the lives of individuals with rare conditions.
The aim of this celebration is to showcase the progress the centre has made in the last year, with speakers from our specialist clinical services, our research theme and academy.
Full agenda to be announced.
Due to limited capacity we encourage you to confirm your attendance as soon as possible.

Medicine and Me: Young sudden cardiac death
2023-07-20 13:30 - 18:00 | Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE, United Kingdom
Medicine and Me meetings aim to provide an outline of current best practice and future updates for important conditions. They give a direct voice to patients and carers, enabling them to discuss their concerns and reflections on the impact of diagnosis, investigation and management. Physicians, surgeons and indeed all healthcare professionals continue to learn from and be inspired to improve care by hearing directly from patients.
In the UK alone, 12 seemingly healthy people under the age of 35 die from undiagnosed cardiac conditions every week, otherwise known as young sudden cardiac death.
Join us for an event, run in association with the charity Cardiac Risk in the Young, to learn about the latest developments in our understanding of the causes and prevention of young sudden cardiac death, and how to ensure the best quality of life for those living with diagnosed cardiac conditions.
Participants will have the opportunity to hear from some of the world’s leading experts in inherited cardiac conditions and ask questions about their experiences providing support and dealing with affected families.
Attend this event to gain an understanding of:

The causes and prevention of young sudden cardiac death
Methods for early identification of high-risk individuals
Providing optimal care for patients with diagnosed cardiac conditions
How to manage and support affected families
Areas where further research is needed

Get your tickets here

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

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.

Breaking Down Barriers
2023-09-26 09:30 - 16:00 | London
This is the first opportunity for the BDB network to get together in person since lockdown!

26th September 2023 – London

Registration will be from 9:45 am
Start 10:00am
Finish 4:00pm
Lunch will be provided.
Our focus is on bringing the network together, strengthening ties and finding opportunities for collaboration.
Our keynote speakers (to be announced soon) will introduce key changes in the world of genetic services, testing and research.
The workshops are:

Engaging Excluded Communities.
Working together on Patient and Public Involvement and learning from people with lived experience.
Seizing new opportunities in the genetics field

You will have an opportunity to explore two of the above.
The afternoon will include space for us to explore up to three hot topics or challenges. These will be identified by members in attendance.
The workshop will identify challenges for individual member organisations and shared challenges across the network. We will discuss possible solutions, ways to collaborate and explore how BDB can support you and your work.
You can send up to two members of your team to the event but if you would like more people to attend then please get in touch and we can add you to a waiting list. If there are practical challenges to your participation, please do give us a call to discuss them. We will do our best to make the events as accessible to the whole membership as possible. Get in touch with Catherine by email catherine.lewis@alstrom.org.uk to reserve your place today.

WS Conference
2023-09-30 10:00 - 17:00 | Mercure Daventry Court Hotel
You are invited to attend our annual conference on Saturday 30th September 2023, at Mercure Daventry Court Hotel, Sedgemoor Way, Daventry, NN11 0SG 10.00-17.00 (Registration from 9.00 am).
You will have the chance to speak to medical experts from the UK and abroad, as well as the chance to meet other families/individuals affected by WS. There will be workshops as well to take part in. This event is open to anyone affected by or with an interest in Wolfram Syndrome.
For more information or to book your place(s), please go to
http://wolframsyndrome.co.uk/ws-conference/
Email: admin@wolframsyndrome.co.uk
Telephone: 01903 211358
LAST DATE TO BOOK FRIDAY 8TH SEPTEMBER 2023.
The Wolfram Syndrome Global Awareness Day is 1st October 2023. WS groups from around the world will be encouraging their communities to take part in fundraising & the raising of awareness for this condition. More information can be found on the website https://www.globalwsday.org/ .

Annual Lafora Disease Science Symposium
2023-10-09 - 2023-10-10 | Bologna
Lafora disease researchers and clinicians at Instituto delle Scienze Neurologiche di Bologna (ISNB) IRCCS will host the 8th Annual Lafora Disease Science Symposium in Bologna, Italy from October 9-10, 2023.
Chelsea’s Hope is hosting registration. Please register individually to attend the in-person Symposium. If you can’t make it in person, we encourage you to register and indicate your interest in receiving the recordings after the conference.
