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Gene Therapy and SCID

May 22 @ 7:00 pm - 8:00 pm

Gene Therapy and SCID

Invitation to join the SCID Advocacy Group Meeting with special guest speaker Dr Lorna Mc Leman providing an update on a current Gene Therapy study.

The SCID advocacy group has been meeting regularly since 2021 to move forward SCID advocacy across all states and territories.

This month, we are inviting all SCID families to attend this meeting as we will be joined by – Dr Lorna Mc Leman, Research Fellow, Murdoch Children’s Research Institute, Melbourne. Lorna will be outlining a current consumer study about Gene Therapies. We were fortunate enough to hear some of these insights at the recent National conference we held in March, and are looking forward to the next updates. The meeting will also provide an opportunity for IDFA members to be involved in the study as either participants or as Consumer Advisors so please come along to hear about this unique opportunity to be involved in research.

Meeting Agenda 
  1. Welcome and Apologies
  2. Previous Meeting Actions
    • Campaign timeline
    • List of families and campaign supporters
    • Children’s Book – Carer Survey
  3. Guest Speaker – Dr Lorna Mc Leman
  4. State/Territories Campaign Update
  5. SCID Connect Support Group
    • Update
    • Meeting Facilitator
  6. Achievement of National SCID NBS
    • IDFA media and other activities
  7. Other Business
    • Campaign Update – Access to SCIg Treatment
  8. Next Meeting

Details

Date:
May 22
Time:
7:00 pm - 8:00 pm
Website:
https://us02web.zoom.us/j/82709881915

Venue

Online via Zoom
Australia
Phone
1800 100 198