CSAC open day webinar | 10 October 2023
CSAC webinar chaired Dr Fiona Stewart explains how CSAC play an integral role in helping our rare disease community.
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Weekly webinar series
Every Wednesday during lockdown we organised a series of weekly webinars on topics you might find useful from some familiar faces.
- Feb 8, 2021
The COVID-19 vaccine and Inherited Metabolic Disease: what you need to know
An expert panel addresses questions and concerns relating to the vaccines for those with an IMD.
593 views
- Sep 23, 2020
Focus on Fabry: Fabry treatment update webinar
This webinar for Fabry patients and their families provides information about available interventional studies, who is eligible for them.
343 views
- Aug 25, 2020
Take part in the highly important LSD Collaborative survey which closes soon
In this short clip Dr Tom Kenny, CEO of Rare Disease Research Partners (RDRP) urges you to take part in the highly important LSD...
108 views
- Aug 19, 2020
Get baking with The Big Big Blue Bake Off
Video tutorial and virtual ideas for a baking challenge to support The Big Blue Bake Off.
63 views
- Jul 29, 2020
Have your say to improve services for ultra-rare diseases
If you are affected by an ultra-rare disease we need your help to make support change and improve your care and services.
70 views
- Jul 16, 2020
MPS and COVID: expert advice for patients and families
MPS and COVID webinar for patients and their families.
305 views
- Jul 1, 2020
Bob's top tips on surviving lockdown
Bob Stevens, Chief Executive of the MPS Society and father to two teenage boys with MPS II Hunter, shares his tips for surviving lockdown.
97 views
- Jun 24, 2020
Laboratory investigations of MPS diseases
A video lecture on what happens from a laboratory point of view when it comes to making a diagnosis for MPS diseases.
336 views
- Jun 17, 2020
Focus on Fabry: living with Fabry and coronavirus
First Fabry patient webinar focussing on Fabry and coronavirus is today at 4pm.
274 views
- Jun 10, 2020
Inherited Metabolic Disease and Coronavirus (COVID-19) Webinar – 11 June 2020
The second webinar in this series focuses on how those affected by inherited metabolic diseases may be impacted by the coronavirus outbreak.
152 views
- Jun 3, 2020
Top tips on homeschooling
Gordon Harvey, MPS Society Trustee and father, shares his top tips on homeschooling.
61 views
- May 26, 2020
Implications of the Coronavirus Act 2020 for adult health and social care services
Steve, is here to fill you in on the key points of the Coronavirus Act 2020 and the particular implications on adult health and social care.
198 views
- May 20, 2020
Coping with your family's psychological health
Right now this might feel like a particularly stressful time and so it's really important to look after our psychological health.
259 views
- May 13, 2020
7 ways to have fun in MPS Awareness Week
For this installment of the #WednesdayWebinarSeries we are giving you ideas on how to have fun as part of our MPS Awareness Week campaign!
129 views
- May 5, 2020
Staying active at home with Michelle Wood
Michelle Wood is a physiotherapist at GOSH who has shared her physio advice, ideas, hints and tips to help you keep active at home.
173 views
- Apr 22, 2020
10 tips for taking care of yourself during lockdown
Claire, parent of children with MPS, doctor and mindfulness teacher has produced a short video giving tips on self-care during lockdown.
1,415 views
- Mar 23, 2020
Webinar on coronavirus (COVID-19) and living with an inherited metabolic disease (IMD) 23 March 2020
Thank you to the panel members who joined today's webinar and to the British Inherited Metabolic Disease Group (BIMDG), Metabolic Support...
452 views
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