Clinician network
The International Clinical Council on FOP is a group of global experts in FOP. They publish the treatment guidelines accessible via the link at the top of every page of this website.
We are actively working to build the network of experienced and interested health professionals able to help patients with FOP within Australia and New Zealand. Clinicians receive free FOP Australia membership and can choose to receive twice yearly email updates on developments in FOP care. If you are a health professional with an interest or involvement in FOP management, please contact us on info@fopaustralia.org.
Treatment information for health professionals
For information or contacts, follow the link at the top of every page on the FOP Australia website.
List of contacts:
As FOP is extremely rare, few health professionals in Australia have managed a patient with this condition. The health professionals listed here have previously or currently managed patients with FOP, or are aware of FOP through research activities.
Queensland
Dr Ben Whitehead
Lady Cilento Children’s Hospital Brisbane
Mobile: 1300 762 831
Dr Sateesh Shankaranarayana
Princess Alexandra Hospital
199 Ipswich Rd, Woolloongabba
Dr Jim McGill
Lady Cilento Children’s Hospital Brisbane
Tel: (07) 3068 1111
Jim_McGill@health.qld.gov.au
Dr Paul Kubler
Rheumatology Department
Royal Brisbane Hospital
Tel: (07) 3636 8111
GENERAL PRACTITIONERS
Dr Graeme Wright
Junction Road Family Practice
Bonny Place, 318 Junction Road
Clayfield Qld 4011
Tel: (07) 3857 2711
Dr Susie Yates
Ipswich Road Medical Centre
582 Ispwich Road
Annerley Qld 4103
Tel: (07) 3848 2447
NURSES
Anita Inwood
Lady Cilento Children’s Hospital
Mobile: 0412 384 989 | 0415 674 527
Anita_Inwood@health.qld.gov.au
AGENCIES
Montrose Access
info@montroseaccess.org.au
NDIS Qld
Fiona Anderson
Qldengagement@ndis.gov.au
Communities Queensland/NDIS
New South Wales
Prof Craig Munns
Endocrinologist
The Children’s Hospital, Westmead
02 9845 3200
SCHN-CHW-Bone&Mineral@health.nsw.gov.au
Prof Ralph Nanan
Nepean Hospital
PO Box 63 Penrith, NSW 2751
Tel: (02) 4734 2612
ralph.nanan@sydney.edu.au
Dr Nick Wood
Paediatrician
Tel: (02) 9845 1429
nicholas.wood@health.nsw.gov.au
Dr Felicity Collins
Geneticist
Westmead Childrens Hospital Medical Centre
Tel: (02) 98452528 | (02) 98450000 | (02) 98453273
felicity.collins@sydney.edu.au
Dr Davinda Singh-Grewal
Paediatrician
Tel: (02) 9845 0000
Professor David Silence
Geneticist
Tel: (02) 9845 9780
Adult Genetics Clinic
Westmead Hospital
GENERAL PRACTITIONERS
Dr S Azizi
169 Smith Street South
Penrith NSW 2750
Mobile: 0247 225 611
Victoria
Mr Leo Donnan
Orthopaedic Surgeon
Tel: (03) 9328 3544
64 Chapman Street
North Melbourne Vic 3051
info@leodonnan.com.au
Prof Ravi Savarirayan
Murdoch Childrens Research Institute
Royal Childrens Hospital
Flemington Road Parkville Vic 3052
Tel: (03) 8341 6244
ravi.savarirayan@vcgs.org.au
South Australia
Dr Josephine Thomas
General Physician
Royal Adelaide Hospital
Tel: (08) 8222 4000
Northern Territory
Dr Annie Whybourne
Paediatrician Royal Darwin Hospital
Tel: (08) 8920 6240
annie.whybourne@flinders.edu.au
Western Australia
Dr Lydia Scott
General Medical Consultant
WA Country Health Service Kimberley
lydia.scott@health.wa.gov.au or via info@fopaustralia.org
International
Frederick Kaplan, MD
University of Pennsylvania
Tel: + (215) 294-9145 (clinical office)
Tel: + (215) 545-0758 (home)
frederick.Kaplan@uphs.upenn.edu
Robert Pignolo, MD, PhD
Mayo Clinic
Tel: + (507) 293-0813
Tel: + (507) 293-7940
pignolo.robert@mayo.edu
Edward Hsiao, MD, PhD
University of California, San Francisco
Tel: +(415) 476-9732
edward.hsiao@ucsf.edu
Mona Al Mukaddam, MD, MS
The Perelman School of Medicine – The University of Pennsylvania
Tel: +(215) 294-9702
Mona.AlMukaddam@uphs.upenn.edu
There is also a list of international FOP clinicians in the current medical guidelines, locatable using the link at the top of every page on the FOP Australia website. These guidelines are published by the International Clinical Council on FOP.
Dental issues
Dental issues in patients with FOP require specialist management. Liaise with a medical FOP specialist to help find appropriate care.
Please note the specialists listed below are based overseas, if you need assistance in locating a local dentist please contact us
Corrie J. Crowe, DDS
Office: (856) 258-4025
Mobile: 0407-701-3210
drcrowedentistry@gmail.com
Clive Friedman, DDS, FAAPD
Paediatric Oral Health & Dentistry
(519) 657-6014 (cell)
clive@dentistryforkids.ca
clivesf@protonmail.com