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Extraordinary General Meeting

9 September 2020

On 30th September 2020 at 5.30 pm UK time the IGA will hold a short special general meeting (via zoom) to present to our members a number of changes to our constitution, which if approved will allow us to apply to become a registered charity in England and Wales.

The formal notice of the special general meeting has been emailed to the IGA representatives of all our member patient associations.

What are the changes: The changes we are proposing do not change what we do or seek to achieve. Since the constitution was written in 2008 there have been some changes in charity law and the way we have written our objects, these are what we seek to do are not written in the correct language. In addition there is a re -write of clause 8 that outlines if the IGA is shut down then any funds would need to be given to another similar charity. And finally we would update our name from the EGA to the IGA.

A copy of the IGA’s constitution with the proposed amendments is attached.

Why are we doing this: The IGA have set up a new company, this company is called International GARDIAN limited and will own and govern our new global neuronopathic Gaucher disease registry. This new company is wholly owned by the IGA. In setting up this new company the IGA has been advised to apply to become a charity registered in England and Wales, where the IGA main office is based. This new charity status would assist in the flow of any grants that the new company would award to the IGA to support its annual global work programme.

What do I need to do: We will hold a short special general meeting to ask our members for their approval of these changes. You need to complete a proxy form (sent with the formal notice) and then choose one of the options below:

1.You can complete the attendance and proxy form and send it back to us and then dial into the special general meeting on the 30th September at 5.30 pm UK time

2. If you are not able to attend the meeting in person, you can complete the attendance and proxy form and send it back to us with your voting preferences.

All proxy forms should be completed and returned to Jo McPherson : by 5pm (UK time) on Monday 28th September 2020.

If you haven't received your notice or have any questions, please email Jo McPherson.