Fibrodysplasia Ossificans Progressiva is one of the most rare and disabling conditions known to medicine, causing muscle/soft tissue to be replaced by bone, leading to progressive and permanent loss of mobility. There is a global research effort looking for a cure, and April 23rd marks the anniversary of the discovery of the FOP gene, a major milestone in this battle. Therefore April 23rd is International FOP Awareness Day.
Although donations are crucial for research to continue, simply showing support is also important because having a rare disease like FOP can be very isolating. Raising awareness of rare diseases is important so that the community (and our political representatives) know the importance of providing resources for people with rare disease. Increasing awareness of FOP is particularly important to help increase recognition and prompt diagnosis, avoiding harm from unnecessary investigations. So this month we are asking you to show people with FOP that you care and support the effort to #cureFOP by helping us spread the word on April 23rd!
How to help in 1 second:
From now until FOP Awareness Day on 23rd April we will be sharing 16 facts about FOP on our Facebook and Twitter pages – one for every person living with FOP in Australia and New Zealand. We would love you to like/share/retweet our messages.
This month we also want to spread the word further by increasing our Facebook followers… We having over 500 followers now, can you help us reach 1000?If everyone invites at least one friend to follow us, we can do it! Please invite your ‘plus 1’ to our Facebook page today!
How to help in 1 minute:
Other ways to help include using the FOP Awareness Day profile picture and use the hashtag #cureFOP on social media. Use this banner as an email signature or social media cover picture during April to help get the message out to your contacts.
How to help in 10 minutes:
Please take some time to read and share our new profiles at ‘My Life with FOP’ to help others understand how FOP affects peoples’ lives. This website includes many other resources to share including FOP FAQs, treatment guidelines, informative videos, upcoming events, newsletters, how to help fundraise, and links to donate or become a member.
Read more about FOP Awareness Day activities worldwide from the International FOP Association here. If you have ideas on how you can help FOP Australia increase awareness in your community, we would love to hear from you at email@example.com. Thank you for helping us with our 2017 FOP Awareness Day campaign and to #cureFOP !