Promising FTD Gene Therapy from AviadoBio Featured in the UK Guardian
The FTD Disorders Registry
The FTD Disorders Registry (FTDDR) is designed to bring together the frontotemporal degeneration (FTD) community – people affected personally as well as those involved professionally. The goal is to work together to bring treatments and cures to this spectrum of disorders included under the umbrella of FTD: bvFTD, PPA, PSP, CBD and FTD-ALS.
Based in the USA, the FTDDR is both a Contact Registry and a Research Registry:
- As a Contact Registry persons affected by FTD, their caregivers, family members, and friends can join and receive emails about FTD including important research updates and study opportunities. Contact Registry enrolment is open to the international community so those impacted by FTD in Australia can join the Contact Registry.
- At present, the Research Registry is ONLY open to people in the US or Canada – the ultimate plan is to roll this out internationally in the future.
The AFTDA supports this registry and encourages everyone involved in any way with FTD to find out more about joining this registry by visiting the registry website here or by catching the latest news on their Facebook page here. All participation is valuable, even participation from people who have already lost a loved one to FTD. Your experience can teach us a lot.