The Genetic Support Network of Victoria Rare Disease Day 2021

Online

are Disease Day takes place on the last day of February each year. This year the Genetic Support Network of Victoria will hold a virtual event to raise awareness amongst the general public and our community of Genetic, Undiagnosed and Rare disease patients, their families , support groups, clinicians and researchers, health professionals and anyone […]

Health & Rare Disease Expo

Online

Our health and wellness Expo is Free, feature workshops with Patients and an Ask The Expert to hear from professionals to ask questions. About this Event Health and Rare Disease Expo Saturday, February 27, 2021 12pm- 2pm EST Carion Fenn Foundation presents our Health and Rare Disease Expo in partnership with Lakeridge Health & Ajax […]

24 Hours of Rare Even

Online

This Thursday 4th March at 11am EST, Naomi Litchfield, our Patient Advocacy Manager, will be hosting a panel at the 24 Hours of Rare Event, discussing What are the Ethical Preapproval Considerations for Rare Patient Groups?   She will be joined by Alison Bateman House (Ethical Professor NYU), Alexandra Hall (Director The Isaac Foundation) and Lucy and Mike Carrol (Ollie’s Army).   If any of you […]

Pituitary Foundation Virtual Conference 1-6 March 21

Online

Pituitary Foundation Virtual Conference 1-6 March 21 Join us as we hold our first ever online conference! Videos will be shared throughout the week, including some live peer support sessions that you can join in with too. This event is FREE for everyone to watch, but we will welcome donations from anybody that feels they […]

Free

UnRavelled: Virtual Screening and Live Seminar

Online

Art, music and science intersect in UnRavelled, a new drama by award-winning, Los Angeles-based playwright Jake Broder. About this Event The Global Brain Health Institute presents the virtual premiere of UnRavelled, a new play about love, art and who we are on the most profound level. Based on true events and incorporating research and interviews conducted […]

Repurposing drugs: the opportunity and the challenges

Webinar

We are delighted to invite you to a seminar on strategies to address the opportunities and challenges of repurposing drugs for patients with diseases that are poorly treated with current therapies. Drug repurposing represents a potentially rich source of new therapies because it involves the use of de-risked medicines that are already available to patients. […]

#PitHour

Twitter

PitHour with the Pituitary Foundation Join us on Twitter (@Pituitary_org) to discuss some of the most important issues facing pituitary patients. We hope to be joined joined by patients, carers and medical professionals from across the country (and globe) to start important conversations. #PitHour is at 7-8pm on the third Wednesday of every month, each […]

INAUGURAL RDNN WEBINAR

Webinar

Are you a nurse/allied health professional working or interested in rare diseases? At RDNN we are building a community to support each other, share stories and learn from our peers to improve the care we offer to our rare disease patients and their families. Join us for our first webinar, featuring Liz Morris, Lead Specialist […]

Cambridge Festival- NIHR organisations online events

Online

Join the NIHR at the new Cambridge Festival! The new Cambridge Festival will take place from 26 March to 4 April 2021, with more than 350 free online events and activities for everyone. The National Institute for Health Research (NIHR) is the UK’s largest funder of health and care research. Its mission – to improve the […]

free

The Grander View – How modern microscopy illuminates a rare disease

Online

Stefan Marciniak, professor at the University of Cambridge will answer this question : “How modern microscopy illuminates a rare disease?" About this Event Light microscopy was already old when Victor Hugo pondered its “grander” view 150 years ago. Today, microscopy continues to develop…   The Alliance Française Cambridge joins with the Cambridge Festival and CIMR […]

Meaningful technology: putting participants at the heart of research

Engaging participants in biomedical research remains a huge challenge. Even with a coherent cross-channel communications strategy it remains hard to meaningfully engage with participants as individuals in a way that maintains their interest over time. For the last year, Genomics England and Sano Genetics have been working together to better understand how research participants can […]

#PitHour

Twitter

PitHour with the Pituitary Foundation Join us on Twitter (@Pituitary_org) to discuss some of the most important issues facing pituitary patients. We hope to be joined joined by patients, carers and medical professionals from across the country (and globe) to start important conversations. #PitHour is at 7-8pm on the third Wednesday of every month, each […]

Making the Unseen Seen ARDEnt Report

Online

At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates came together to take Action for Rare Disease Empowerment. To make visible the unseen impact on rare diseases, so that the existing services for rare patients can be preserved, and the lessons of COVID-19 be learnt for the delivery of […]

BBS UK Virtual Conference

Online

About the virtual event Our annual conference is back, this time available virtually via ZOOM on Friday 14th May (between 1pm – 4:30pm) and Saturday 15th May 2021 (between 1pm – 5pm). The event will be free of charge and will feature a selection of talks about research and development in the world of BBS as well as advice, […]

#PitHour

Twitter

PitHour with the Pituitary Foundation Join us on Twitter (@Pituitary_org) to discuss some of the most important issues facing pituitary patients. We hope to be joined joined by patients, carers and medical professionals from across the country (and globe) to start important conversations. #PitHour is at 7-8pm on the third Wednesday of every month, each […]

17th Annual Anglonordic Life Science Conference

County Hall Belvedere Road, London

17th Annual Anglonordic Life Science Conference Anglonordic is the only life science conference in the UK that is exclusively for European investors and R&D companies from the Nordics and the UK to connect with each other. With an established format of panel discussions, parallel technology and biotech investment rooms, plus 1:1 meetings, this one and […]

£450

Drug Repurposing for Rare Diseases 2021

Online

Drug Repurposing for Rare Diseases 2021 15th – 16th June 2021 Online via Swapcard Findacure’s Drug Repurposing for Rare Diseases Conference is back for an eighth year, and this time, it’s gone virtual!   Our annual repurposing conference highlights the best examples of repurposing in the field of rare diseases. An event distinctive in its collaborative and […]

#PitHour

Twitter

PitHour with the Pituitary Foundation Join us on Twitter (@Pituitary_org) to discuss some of the most important issues facing pituitary patients. We hope to be joined joined by patients, carers and medical professionals from across the country (and globe) to start important conversations. #PitHour is at 7-8pm on the third Wednesday of every month, each […]

International TSC Research Conference 2021: A Vision for the Future

Online

Welcome to the International TSC Research Conference 2021: A Vision for the Future. Proudly organised by the Tuberous Sclerosis Association (TSA-UK). The International TSC Research Conference is held annually to bring together academics, healthcare professionals, industry, patients and patient representatives from around the world to share their knowledge and experience and to learn about new and exciting developments […]

£129
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