Gene Therapy and SCID

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.

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