Thank you to everyone who participated in our first FOP Australia and New Zealand Community Survey. The survey was sent to all members of the Australia and NZ families and patient group. Pleasingly we had 31 people respond and now have some concrete insights, feedback and data to help inform board activities.
The top three strategic priorities:
- Advocating for access to a treatment when available– 87% ranked this as the number one priority
- Build and maintain links with academic centres and pharmaceutical companies to bring up to date trial and drug information/opportunities to the FOP community – 84% ranked this as the second priority
- Connection with IFOPA and other international FOP communities was ranked the third highest with 68%
We shared the concept of working together to develop a patient family gathering within the next five years. It is clear from your feedback that this is something of particular importance and value to people with FOP. We will be sharing more ideas of how we could start to plan for this and will be asking for volunteers to get actively involved through joining a working group.
We were delighted to hear how much you agreed that the information you receive through FOP Australia is informative (94% agreed) and relevant (97% agreed). Facebook is the most followed social media platform and our quarterly newsletter, website (fopaustralia.org), Facebook and email announcements is how the majority of you prefer to receive news/announcements.
We have opportunities to improve the communities understanding of when you should reach out to FOP Australia, who you could get in touch with and how you would do this. As an immediate first step we have updated our online board member profiles which should help with this.
Continuing to raise awareness, fundraise, advocate with key members of the communities in which we live remain key to our success more broadly. Many of you in the survey expressed you own personal interest to play your part with these. We have added a page on our website to help you create a fundraiser, and you can find out about ongoing fundraising activities as well. We will continue to try to make it easier for you to know how to get involved and support you in any way as we continue to advocate for treatment when available and building our relationship with the broader international FOP community including drug companies.
Feedback from the survey has informed our strategic planning for 2019/2020, directly impacting our Key Performance Indicators chosen for this financial year. We will share more from the survey and actions at our Annual General Meeting in October.