Rare Diamond Project

This award honours individuals that have led and implemented innovative projects that aimed to deliver better health care solutions. The project has shown strong results in improving the life of our rare disease patients.

Jedi - Tedi 

My name is Jed Kagan and I am 12 years old. In the year 2016, I was diagnosed with complex regional pain syndrome (CRPS) which is a very rare pain disease. CRPS affects the nerves and the messages to the brain so that the body is in excruciating pain. It Is the most painful disease ever known. CRPS affected my left foot and knee and left me bed ridden for 3 months. I couldn't go to school or see my friends and had to take 32 pills a day. On some days the pain was so intense that the only relief I could think of was suicide. No private doctor could diagnose or treat me which left me feeling trapped with the terrible CRPS disease.

Little Bjird

My name is Marita Minnie, I am the mother of a cleft palate, Pierre Robin Sequence child who has a Gastrostomy feeding tube. He was born in 2015 and could not swallow due to aspiration/swallow/digestion problems. I very quickly realized that there is a huge gap in feeding tube counselling, awareness and data with regards to feeding tubes, hygiene and care related issues in South Africa.

Little Bjird was established in 2016 as an awareness campaign to help mothers and care takers of children/ adults with these feeding devices. I have given numerous counselling sessions on the care and hygiene of the feeding tubes in the area of Richards Bay and, and in my campaign realized that there was a necessity for hygiene products.

Rare Bear Project

The #RareBearProject is all about supporting our community. From providing support to our Rare families, to creating jobs and income generating opportunities to the woman of Kya Sands. 100% of our income goes straight back into this project.

For every bear sold for R150, R100 is paid to the creator of the bear, and R50 is placed into improving the marketing platform and distribution of the overall project to ensure sustainability.

Iris House Children's Hospice

Mother of 2 boys Sue van der Linde moved to South Africa as a child, where she was deeply affected by the work of her late mother as a Day Care Mother and Creche owner. The passion and love for children displayed by her mother left a lasting impression on her, and would later emerge as a passion too. 

Her mission was realised when she formed Iris House Children’s Hospice (named in honour of her late mother) in 2011. Starting with two volunteer carers, offering community based respite care to families in need, Iris House has grown from strength to strength and now serves over 415 families

Hi Hopes

Prof Claudine Storbeck is the Director of the Centre for Deaf Studies, which she founded at The University of the Witwatersrand in 1998. She initiated the first professional teacher training programme for teachers of the Deaf in South Africa and the CFDS now offers the following: PGCE specializing in SASL as a subject, BEd hons in Deaf Education, a PGDip Ed in Deaf Education along with opportunities to do both a Masters and PhD by Dissertation or publication in Deaf Studies.

She is the founder and director of the HI HOPES early intervention programme, the 1st home-based family-centred programme for families of deaf infants in Africa.

The Sclerosteosis Research Project

Timothy Dreyer (BSc(Hons), MSc(Med), PhD student, University of Pretoria, South Africa)

I am a 28-year-old PhD student and also a patient with sclerosteosis, an ultra-rare bone condition that is prevalent in South Africa.

The condition is characterised by hearing loss and multiple other symptoms, and is managed through many extensive surgeries throughout life. The hearing loss and surgery affected my life significantly, often disrupting school, university and requiring long periods of recovery.


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