About this Talk
In this talk, Becky Jenner discusses why it is so important to find more families with Rett in our countries with the advances in drug treatment and gene therapy. She also gives some suggestions about how fledging parent organisations can raise awareness, what campaign ideas and resources others have used that they can easily adapt and translate. Then she looks at how you can engage them and what other organisations can support your efforts to build a strong patient advocacy group.
Speaking as one voice for all families affected by Rett in your country is going to be very important to make a strong case to the regulatory bodies – the European Medical Agency to approve a treatment and for the funding body in your country to pay for it. Parents can actively engage at different stages with the EMA showing the impact Rett syndrome has on the individual and the family, and the difference a treatment would make. Finally, she looks at a couple of funding opportunities that might support your efforts.