Date: Thursday April 15th, 2021
Time: 10:30am to 12:30pm (London, UK)
Place: Online Zoom Meeting
The meeting will very informal, but should help us to plan the year ahead, ensuring that we have the right priorities to support you and the Pompe community. So, the Agenda is open to all individuals joining the call, but you might be interested to raise topics such as:
- Pompe Support Network – what support do people need? How can I help?
- Podcasts, film, videos
- Meet trustees, staff and volunteers
- Complement or compete with other patient support groups?
- What is the International Pompe Association?
- Allan Muir is Vice-chair of the IPA, so can discuss some of their work
- What happens on International Pompe Day?
- New Pompe disease drug submissions for Market approval in 2021
- New technologies – Gene Therapy – What do you need to know?
- Patient representation at NICE Technology Appraisals (TAs)
- Mental Wellbeing
- Physical health
- How many more surveys?
- Future “Zoom into Pompe” Meetings
