As many of you will know, Professor Matt Brown’s group from Queensland University of Technology and Princess Alexandra Hospital (PAH) and Dr Ben Whitehead from Brisbane’s Lady Cilento Children’s Hospital in Brisbane have been acting as the Australian/New Zealand centre for FOP clinical trials, currently with studies of Palovarotene sponsored by Clementia.  Coordinated by Linda Bradbury (nurse practitioner, PAH) this has meant Australian/New Zealand patients have been able to participate in the studies without having to fly to the US, something that previously prevented many of us participating.

Clementia have recently announced that in an interim analysis of what is called a ‘phase 2’ study of Palovarotene that the medication looks to be effective at significantly reducing the amount of new bone that develops during FOP flares.  Importantly the medication also appears pretty safe.   This is extremely exciting and so Clementia have decided to proceed with the definitive ‘phase 3’ study of the medication.  Professor Brown’s group will again be the Australian/New Zealand centre for that study, which will be open to FOP patients age 4 or more years.

The study won’t begin enrolling until towards the end of this year but clearly this is a great opportunity for FOP patients to get access to what at this point looks like it may be the first really effective medication to slow the progression of FOP.

If you have any queries about this, please send them by email to Linda at linda.bradbury@qut.edu.au

Brooke Scott

IPC Representative IFOPA

Secretary FOP Australia

The second edition of our quarterly newsletter is out now, just in time for FOP Awareness Day on April 23rd!

In this issue…
– FOP Clinical Trial Centre: Prof Matt Brown talks FOP research in Australia
– Fundraising frenzy: Aussies run, dance and decorate nails to #cureFOP
– IFOPA Quality of LIFE Awards: Practical support from our global community
– Your story is a gift to FOP research: The FOP Connection Registry
… and more!

If you have news or information to share with the FOP community, or would like to suggest future topics, we would love to hear from you!

All members will receive this by email. If you do not receive your emailed copy of the newsletter within the next week please get in touch by emailing us with your updated contact details at info@fopaustralia.org.

Our very first quarterly FOP Australia Member Newsletter is now out!

In this issue…

• Research Update from the 2016 IFOPA Drug Development Forum (including news of the first clinical trial to enrol in Australia!)
• What is Rare Disease Day?
• Jamberry Online Fundraiser begins 10th February
• Every dog has their day: Tyson at the AFL Grand Final
• Q+A with Prof Kaplan and Dr Pignolo: Transcript now online

… and more!

If you have news or information to share with the FOP community, or would like to suggest future topics, we would love to hear from you!

All members will receive this by email. If you do not receive your emailed copy of the newsletter within the next week please get in touch with your contact details.

The first of our twice-yearly clinician updates has also been released. To make sure your health care team receive these updates and stay in touch with the latest developments in FOP treatment,  remind them that all clinicians get lifetime free membership to FOP Australia, just by emailing us at info@fopaustralia.org.

The FOP Australia Annual Report for FY 2015/2016 is now available.

The report shows our key activities for the past financial year, financial information, our structure and people, and most importantly acknowledges the people that have helped us to achieve the great results of the past year.

Thank you to everyone who has played a part in our success, we look forward to working with you to find a cure for FOP.

Read our Annual Report 2015/16 here.