DRAVET SYNDROME - WELCOMED NEWS TO SHARE! Does anyone remember the September 2023 ABC News article on the push for Fenfluramine which is prohibitively expensive and costs $10,000 every 60 days, putting it out of reach of most patients? https://www.abc.net.au/news/2023-09-05/mum-vows-push-fenfluramine-pbs-pbs-dravet-syndrome-epilespy/102803232 Families priced out of medication Paediatric Neurologist and Epileptologist Professor Ingrid Scheffer AO (pictured) has been leading Fenfluramine Trials at Melbourne's Austin hospital and said it would be a big step forward for Australian patients with Dravet syndrome if the drug was added to the Pharmaceutical Benefits Scheme . "Fenfluramine is a transformational drug for the 60 to 70 per cent of patients in whom it works," Professor Scheffer said. As from 1 May 2025, FINTEPLA (Fenfluramine) will be reimbursed through the PBS as an add-on therapy for people living with Dravet syndrome - a rare, severe form of epilepsy. Dravet syndrome starts in infancy, brings frequent treatment-resistant seizures, and significantly impacts cognitive, behavioural and motor development. It also carries a 17 percent mortality risk by age 20, often due to Sudden Unexpected Death in Epilepsy (SUDEP). The current PBS lists the price of a Fenfluramine Script at $31.60 or $7.70 with a Concession Card! #epilepsyawareness #dravetsyndrome #EpilepsyCentre #epilepsysupport (fb)

Our Face to Face PEER SUPPORT Groups are ready to launch again! We've listened to our families and supporters and the absolute need for people to be in touch in person. The incredible empowerment by creating real relationships that this gives individuals. If you want to be a part of these groups, facilitated by our Registered Nurses then please email us at enquiries@epilepsycentre.org.au and we'll be in touch. Thank you sincerely to our own South Australian Coopers Foundation for their incredible donation to make this happen! (fb)