Hopefully by now you’ve all seen the fantastic results that Vertex reported last week regarding their latest trials with precision therapy for those with both double DF508 and a single DF508 mutation combo. Vertex shares are up 21% and the reported results are pretty exciting. Although the trials were for patients 18 and older, it sounds like they’re fast tracking the next late stage trials (earmarked for early 2018) so let’s hope pediatric trials follow swiftly. Continue reading “Vertex reports great results for its latest trials targeting double DF508 and single DF508 combos”
Register for The Kaleidoscope Project
Posted on September 16, 2016 by CF Parents
Engaging Children and Families in Research – a one day workshop
This one day workshop brings together children, families, communities, and health professionals to learn and discuss how to engage children with chronic conditions and their families in research. The forum will be facilitated by Sally Crowe from the United Kingdom, who is a world-recognised expert in patient engagement, a member of the British Medical Journal’s Patient Panel and former Co-Chair of the UK-based James Lind Alliance (JLA), which facilitates research priority setting partnerships globally.
Who can attend? Children (aged 11-18 years) with a chronic condition, adult family members (with children aged 0-18 years), caregivers, patient advocates, healthcare providers, policy makers, and researchers.
When? 9:30 am – 4:30 pm Saturday 15th October 2016
Where? Mercure Hotel, Sydney NSW, Australia
Registration: Registration is free and limited to 80 participants. Please register your interest here http://www.thekaleidoscopeproject.com.au/national-forum-2016/ and a confirmation email will be sent to you within three days of submission.
If you have any questions, email Dr Pamela Lopez-Vargas at firstname.lastname@example.org
The Kaleidoscope Project
Supported by NSW Ministry of Health
Better Treatment 4 Kids Network
The Children’s Hospital at Westmead
The University of Sydney
A group in the UK are trying to determine what are the 10 most important unanswered research questions in CF. They are seeking responses from patients, families and staff. The responses will then direct research priority and funding.
If you’ve got a moment, please take the time to complete the survey and forward it to any of your fellow CF parents who might be interested.
Survey can be found here https://www.surveymonkey.co.uk/r/QuestionCF1