FOP Australia

Our mission is to raise awareness and find a cure for Fibrodysplasia Ossificans Progressiva.

[FOP Australia @FOPAustralia]

Today is FOP Awareness Day.This year is different, our community is grieving the loss of one of our own, @imolliecollins.Ollie has impeccable style and no doubt would have loved to show off a pair of his latest shoes. Please join us today by sharing pictures of your #FunFeet4FOP

[FOP Australia @FOPAustralia]

Research into FOP may also help researchers find answers into more common conditions:
- Osteoporosis
- Heart diseases
- Rare childhood brain cancer
- Bone growth after burns and amputations
- Hip replacements
#CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP

[FOP Australia @FOPAustralia]

FOP sucks. But if you asked someone living with FOP, if there was anything good about it...they would most definitely say 'the people.' The FOP community is strong and supports one another like a family. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP

[RARE Revolution Magazine® @RareRevolutionM]

We're really looking forward to tomorrow's #tuesdaytakeover being hosted by International FOP Association (#IFOPA), International Fibrodysplasia Ossificans Progressiva Association

We hope you can support them tomorrow and please do share the posts to help raise awareness!

[FOP Australia @FOPAustralia]

See how kids and teens explain FOP to their friends and schoolmates at https://t.co/s3j9kwKt6l #cureFOP #UnitingToCureFOP #FOPAwarenessDay #SameButDifferent

[FOP Australia @FOPAustralia]

Many people with FOP have an assistance dog that can help them carry out simple, everyday tasks such as picking up objects. They are practical helpers and a source of comfort and friendship. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #FOPAwarenessDay

[FOP Australia @FOPAustralia]

FOP does not affect intelligence. People with FOP do well at school and many go on to trade school, college or university and have successful careers. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support #RareDisease

[FOP Australia @FOPAustralia]

People with FOP strive to live independently and find ways to use adaptive devices like extended straws, reachers and adaptive clothing, to find creative ways to help them complete everyday tasks as their range of motion progressively diminishes.https://t.co/l5YbDk15NW #CureFOP

[FOP Australia @FOPAustralia]

Meet Jazmin whose son Nicolas lives with fibrodysplasia ossificans progressiva (FOP). Hear how FOP has brought their family both tears and joy. Watch now at https://t.co/ygEsIt0Efs #cureFOP #UnitingToCureFOP #FibrodysplasiaOssificansProgressiva

[FOP Australia @FOPAustralia]

FOP is a challenging disease. Someone with FOP can feel great and be able to walk one day and be in pain and need to use a wheelchair the next. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support #RareDisease #April

[FOP Australia @FOPAustralia]

Disability caused by the growth of FOP bone is cumulative and increases over the course of a person's life with FOP severely limiting their ability to perform even basic activities of daily living. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #FOPAwarenessDay

[FOP Australia @FOPAustralia]

No one knows when FOP will strike. It can be silent for some time...then will flare up without warning. A flare up could last days, weeks, months or even a year or more. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support

[FOP Australia @FOPAustralia]

Meet Maëlle from France who lives with Fibrodysplasia Ossificans Progressiva (FOP).Hear how despite what FOP takes physically as bone grows uncontrollably in her muscles, she feels FOP has given her a lot, especially strength. Watch now at https://t.co/MfO1Vj4sMa #cureFOP

[FOP Australia @FOPAustralia]

31% of people with FOP have some or total hearing loss due to new bone growth in the ear. Source: IFOPA's FOP Registry
#CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support #RareDisease #Charity #April

[FOP Australia @FOPAustralia]

Bone growth in the muscles of the face and mouth can make a person with FOP's jaw lock making eating and dental care extremely difficult. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support #RareDisease #Charity #April

[FOP Australia @FOPAustralia]

FOP is caused by a random, spontaneous mutation in the ACVR1 gene in utero. Once a person carries that mutated gene, they have a 50% chance of passing it on to their child.
#CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay

[FOP Australia @FOPAustralia]

Meet Yoki from Hong Kong whose daughter Haley has fibrodysplasia ossificans progressiva (FOP). Hear how parents struggle to keep their children safe so FOP doesn't flare up, but still want to allow them to be kids. Watch now at https://t.co/gRis9YB2q5 #cureFOP #UnitingToCureFOP

[FOP Australia @FOPAustralia]

52% of individuals with FOP receive an incorrect diagnosis. The journey from symptoms to a correct diagnosis takes an average of 1.5 years for those diagnosed since 2016. Source: IFOPA's FOP Registry.
#CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP

[FOP Australia @FOPAustralia]

Swellings which look like tumors, may appear as early as infancy -either spontaneously or after a knock, bump or fall. Swellings can be misdiagnosed as cancer, leading to unnecessary and potentially harmful procedures #CureFOP#FibrodysplasiaOssificansProgressiva #UnitingToCureFOP

[FOP Australia @FOPAustralia]

97% of those with FOP carry the classic mutation of the disease; 3% have a variant mutation. #CureFOP #FibrodysplasiaOssificansProgressiva #UnitingToCureFOP #IFOPA #Disability #FOPAwarenessDay #Support #RareDisease #Charity #April