OUR PROJECTS
2023
KENYA | MOROCCO | SOUTH AFRICA
KENYA
HEALTHCARE EDUCATION
April we were off to beautiful Mombasa, Kenya where the PAFLAR Africa conference was being held. Their mission is to improve the healthcare of children with rheumatic and musculoskeletal diseases in Africa, a fitting space for us to share the stage.
We set up a stand with educational materials and spoke to doctors about FOP and finding people who have it. Every conference is another opportunity to spread the word and extend our clinicians’ network. The more educated eyes on the ground the better.
We were proud to share the space with other members of the Rare Bone Disease Alliance (RBDA) too.
MOROCCO
We’ve known about a patient in Morocco for many years now, and he is connected into our FOP community through our WhatsApp group.
However, he feels isolated without any real support or medical network. We decided to change that!
Our Executive Director, Odette, flew to Casablanca to see our first-ever Clinician Champion’s Alliance consult in action.
The Tin Soldiers Clinician Champion’s Alliance is a global team of doctors, who are committed to improving patient outcomes and advancing the field of musculoskeletal medicine with a specific focus one FOP.
Abdelghafour had a multi-disciplinary team consult with Dr Kenza Buoyed, Dr Asmaa Sakhi and Dr Mouna Hamza, on his medical and dental health and the way forward.
Life-changing indeed!
SOUTH AFRICA
EAST LONDON
The team travelled to East London, South Africa in partnership with Life Healthcare to engage and educate nurses in March 2023.
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With an audience of 80 nurses, Dr Chris Scott presented a talk on FOP and one of our warriors Ciske Faber, shared her personal journey as a patient living with FOP.
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Flyers and diagnostic handbooks were handed out and names and consent collected to add to our healthcare practitioner's database
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Visited the Amalinda Unjani Clinic in East London and educated another 3 healthcare workers
PRETORIA
Attended the Life Healthcare nurses annual conference (Pretoria chapter) with Dr Careni Spencer, to educate and inform on FOP. Total number around 100 attendees.
CAPE TOWN
In November 2023 we held the very first South African Clinicians Champions Alliance Summit in Cape Town, South Africa.
THEME OF THE SUMMIT: Diagnosis changes everything
Encapsulates the pivotal role that accurate diagnosis plays in the lives of individuals with paediatric musculoskeletal conditions. Centred around FOP and related rare bone and joint diseases, the theme emphasizes the profound impact of a timely and precise diagnosis in driving effective care pathways.
The event was well attended with 30 clinicians from 13 countries. Five case studies on various musculoskeletal conditions, including FOP, were presented in a Grand Rounds format.
A robust discussion and Q&A was held after each presentation. These Grand Rounds are now live under the FOR DOCTORS
