A warm welcome to 2022!
It was a bit of a bumpy ride for me, as I recovered from COVID. A special thank you for all the support and well wishes.
We had a brilliant 2021 year. We managed to make valuable connections, secure funding with partners and complete projects that were vitally important. We also managed to put together a robust team of volunteers for 2022.
Our focus will remain supporting AxSpA patients, advocating for our disease in our country and educating all role players involved in AxSpA.
A special thank you to ASIF, this global network, that has more than 45 members, which South Africa is very proud to be part of, forms a integral part of who we are and where we want to go. ASIF provides endless support, resources and sets the perfect example of how to support members with AxSpA.
A special thank to SA Physio, who have dedicated a large part of their Newsletter talking about AxSpA, they continue to support our cause.
Membership:
We have had a 100% growth in our membership in a year, this is an exceptional incline. We now have 250 registered patients and over 758 members on our Facebook Group. It has been proven that patients that belong to a support network have more knowledge and tools to handle their disease. We continue to work hard to talk to rheumatologists and various other key healthcare providers to create awareness of our Patient Support Group.
Funding:
As our Association does not require any membership fees from our patients, we lean heavily on funding from pharmaceutical companies and corporates. We have been lucly enough to receive funding to attend the SARAA conference in May in Durban. We hope that we will receive funding for our GP awareness campaign in Cape Town later this year. We also plan a couple of webinars through the year. We hope to secure funding to administrate our website and paid advertising.
PMB Application Update:
We plan to receive the Treatment Guidelines for AxSPA by the end of March, and we hope to complete and submit the PMB application by June. A special thank to all our associates and SARAA for their valuable support in this matter.
Special Events:
Our Talk to be Heard Event, will no doubt raise some emotions. Talking about your AxSpA is so critical for your healing. More about that later in the newsletter.
Associations:
We have secured a relationship with The South African Optometric Association, and we hope to provide our members with valuable resources soon. We continue our relationship building with rheumatologists in our country. We have managed to distribute more than 6000 pamphlets to various doctor rooms at the end of last year to create mroe awareness, and to hand to newly diagnosed patients.
We look forward to a bumper year, for your ease, we have done a 6 month planning program, so you can diarise all these events.