As 2020 was a test year, we had solid learnings to take onto our next project. We embarked on the rollout program to other underserved communities, and Brazil was next.
With an avid patient supporter and ‘finder’ in Dr Patricia Delai, she led the charge taking the FOP awareness program to the department of health and to the First Ladies Office. Michelle Bolsonaro is a huge supporter of rare diseases and became our first First Lady and patron for FOP.
As well as attending and presenting at two Rare Disease Congresses we established a partnership with Mandic University network to include FOP as mandatory in their undergraduate and post-graduate courses, in 3 medical schools and 6 dentistry schools. Importantly there is now a neo-natal screening policy which will be passed into law imminently.
FOP Germany held a viewing of the new short film titled Diagnostic Odyssey; the film follows the journey of various FOP patients and patients with other musculoskeletal conditions from diagnosis through their journey to a pathway of care.
The short film "Diagnostic Odyssey” was translated and sub-titled in German in collaboration with FOP Germany
The CME Master Series dentistry lectures that were developed in 2020 came to good use as we translated them into Russian and presented to approximately 50 people including paediatric clinicians, patients and families.
Russia adopted our digital poster and had it translated into Russian to use as an education tool when they educate healthcare professionals.
We are always trying to find new and innovative ways of creating as well as getting our content out into the world.
This year we did a beautiful public service announcement, featuring our FOP women warriors which you can view here.
This ad reached approximately 8 million homes across South Africa and 7 million taxi commuters
A short film called Diagnostic Odyssey was produced which shows how the Tin Soldiers models works in action; from the time we receive the lead on a potential new patient, to connecting with them and getting them the help they need.
This 25-minute short film has been seen by over 500 medical professionals, as well as in 4 different countries, translated accordingly. In 2022 the plan is to explore film festival and distribution opportunities
We continued to rollout in South Africa through the Unjani Clinics network; clinics that are nurse owned and operated, reaching approximately 1000 patients per month.
Through 3 clinic visits, we ascertained what challenges the clinics face and how best to educate and support them in helping us find patients with FOP and other musculoskeletal conditions. During these visits 4 paediatric patients with other suspected musculoskeletal conditions were referred to doctors at local public hospitals.
Tin Soldiers presented and exhibited at their annual congress, which is attended by over 100 nurses and healthcare workers, to educate them on FOP and the PGALS diagnostic tool. Delegates at the congress each received materials to take back to their clinics: posters, t-shirts and a diagnostic handbook.
PReS (Paediatric Rheumatology European Society)
TIN SOLIDERS attended the PReS congress with an abstract, which was one of only 30 out of 480 that made the cut for a presentation. We also attended the symposium, with a pre-recorded short film called Diagnostic Odyssey which shows the Tin Soldiers work in action from beginning to end; from when we get a lead on a patient, to finding them, diagnosing them and connecting them to care.
Another short film from the Tin Soldiers content library called ‘Ultra-rare Voices’ was shared with the National Paediatric Nurses Organization and at least 3 Universities in Sweden via email.
We also had flyers adapted and distributed at Children’s week, at Karolinska University Hospital to approximately 500 paediatric nurses & paediatric doctors with the help of FOP Sweden.
RARE BONE DISEASE SUMMIT | DECEMBER 2021
We were invited by Ipsen to participate in the Rare Bone Disease Summit in December 2021.
It was so inspiring and insightful to spend a few days in a virtual room with experts from many different organisations discussing all things rare.
Key topics like overcoming obstacles to diagnosis, optimising care pathways and narrowing the communication gap between patients and healthcare practitioners were workshopped.