OUR PROJECTS
2022
ARGENTINA | BRAZIL | INDIA | SOUTH AFRICA | SWEDEN
ARGENTINA
HEALTHCARE EDUCATION
Tin Soldiers has partnered with Fundacion FOP in Argentina to rollout modules from the Tin Soldiers global CME master series here and in other South American countries.
The Rare Diseases Program of the National Ministry of Health provided the communication platform and invited around 700 health professionals from all over the country to attend.
We continue to work with the local FOP organization in Argentina to explore additional opportunities to educate and inform.
BRAZIL
AWARENESS
A public service announcement (PSA) was translated and sub-titled for rollout in Brazil. These ads help to create awareness in the market for the Tin Soldiers project and inform people of how to connect to us. This ad reached approximately 8 million homes across South Africa and 7 million taxi commuters
HEALTHCARE EDUCATION
The Center of Rare diseases at Mandic school of medicine and dentistry was inaugurated on November 29, 2021. During the inauguration, more than 50 people heard briefly about FOP from Dr. Delai and the Tin Soldiers team. Since then, together with Dr. Zorzi,
Dr. Delai has presented on FOP to 40 post-graduate students.
Brazil's First Lady, Michelle Bolsonaro, is one of our Tin Soldiers’ Patrons and is helping us to spread the word at various Rare Diseases Days as well as at an exhibition called “Journey of the Rare’ to celebrate rare people and their talents.
POLICY CHANGE
The Minister of Health in Brazil has agreed to implement a “technical measure” requiring doctors to review newborn babies’ toes at birth and highlight any abnormalities. The screening is expected to be added to the delivery room protocol imminently. This will be a world-first and a big win for Tin Soldiers. The Ministry of Health has indicated a desire to include the Tin Soldiers global CME master series in their continued medical education program, so we hope to be training many new healthcare professionals in the future.
INDIA
AWARENESS
To raise awareness in India, the team travelled to New Delhi, Bengaluru and Vellore in December 2022 to attend a conference, a family meeting and to film a new documentary ‘The Whisper’
The film is set to tell the story of FOP through the voices of the people who have it, as well as through the eyes of an artist. The artist who travelled with us to meet these remarkable people interpreted what she saw and felt when meeting them, in her own unique language and art form.
We can’t wait for you to see it!
HEALTHCARE EDUCATION
At the National Conference of the Paediatric Rheumatology society in Bangalore, Professors Vrisha Madhuri and Chris Scott gave an interactive and engaging talk, educating doctors on FOP.
With 45 new doctors signed up to our database, our plans are to find many new patients in India.
And last but certainly not least we were invited to attend the first FOP India family gathering, where we had the opportunity to tell Indian families about the work Tin Soldiers is doing.
SOUTH AFRICA
AWARENESS
We have secured a distribution deal for the multi-award winning Tin Soldiers documentary, across parts of Europe and the US in 2022
HEALTHCARE EDUCATION
The team travelled to Vhembe district in Limpopo province, South Africa from 7-10 March 2022, together with Mercy Air and Flying for Life and visited 8 clinics to educate healthcare workers and community leaders on FOP.
Our key objectives were to train and provide paediatric services on the days we visited with the hopes of identifying new FOP patients. In order to ensure sustainability, we left behind printed materials and diagnosis t-shirts to refresh knowledge. We also created whatsapp groups with clinics for easy referral purposes as well as ongoing education. The training covered basics of identifying FOP and JIA as well as the PGALS diagnostic tool for MSK conditions in children. This outreach resulted in 38 professional nurses and 6 home-based healthcare workers being trained.
SWEDEN
AWARENESS
FOP Sweden promoted their #WalkRunRollforFOP campaign which encouraged people to walk, run or roll for a minimum of 1,6km or 20 minutes to raise awareness for FOP.
They asked people to post on social media and tag to spread the word. It was a super easy and fun mechanic and anyone could join in.
They graciously made us one of their partners, to bring awareness to the Tin Soldiers program.
You can follow them on www.fopsverige.se
CONFERENCES
ICCBH | JULY 2022
We are all about finding people with FOP who are living without a diagnosis and connecting them to care and support.
One of the key ways we do this is to educate healthcare professionals.
This is exactly why we are at the International Conference on Children's Bone Health (ICCBH).
We had a poster on display and did loads of networking and spreading the word on the Tin Soldiers work.
We thoroughly enjoyed connecting with our rare friends at Osteogenesis Imperfecta Federation Europe and meeting lots of new clinicians to share the FOP story with.
AMERICAN SOCIETY FOR BONE AND MINERAL RESEARCH (ASBMR) | SEPTEMBER 2022
Tin Soldiers attended the American Society for Bone and Mineral Research (ASBMR) annual meeting in Austin, Texas, US from 9-12 September 2022.
Dr Mona Al Mukaddam presented our poster and Julie Schmidt one of our awesome volunteers was at the poster during the two days telling people about our recent projects.
This meeting was key for us, as it is the world’s largest and most diverse meeting in the bone, mineral and musculoskeletal research field, attracting more than 2,000 attendees from more than 60 countries, including clinicians and researchers, representing all career levels and specializing in a variety of disciplines.
A perfect audience to educate on FOP and to talk about the work Tin Soldiers is doing.
