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Regenexbio Meeting For CLN2 Families

Dear Families,

Following the news two weeks ago that Regenexbio have halted enrolment into their development programmes RGX-181 and RGX-381, the BDFA would like to invite you to a call on Wednesday 29th November at 12-1pm.

This is an opportunity for us to come together to discuss this news, listen to your concerns and answer questions.

We had a further meeting with Regenexbio today and we shall share updates and outcomes from that meeting with families.

We will also update families on the progress being made towards our resubmission for the re-evaluation of Brineura.

We hope that you can join us and we look forward to speaking with you.

Here is the link for the meeting on Wednesday 29th November- 12-1pm

BDFA ADMIN is inviting you to a scheduled Zoom meeting.

Join Zoom Meeting

https://us02web.zoom.us/j/83356884949?pwd=WmFBY211cGEyVGt0TWwxZDBJc3dYdz09

Meeting ID: 833 5688 4949

Passcode: 034901

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With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

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£5 a month
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folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
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for professionals to educate them on
Batten disease