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We are not there yet! – Dr Julia Ambler
Palliative care is an approach that improves the quality of life of patients and their families facing problems associated with...

Rare Diseases SA
Oct 8, 20182 min read


Teaching is my SUPERPOWER – Jean-Mari Van Zyl-Smit
In 2006 I started studying at Boland College for my ECD (Early Childhood Development) Grade R diploma. I was busy studying for about 6...

Rare Diseases SA
Oct 5, 20184 min read


Hannah is a beautiful angel with a big soul, who lives for the present. #Rett
My beautiful little girl, Hannah, was born on 28 March 2016. She was perfect. She was a happy baby, drank well and grew nicely. She...

Rare Diseases SA
Oct 3, 20182 min read


Thank you to our Teachers (and Headmasters!)
Our school journey was a bit of a bumpy start. I first sent Juan to a playgroup. We were all excited to drop him off for his “first day”...

Rare Diseases SA
Oct 3, 20183 min read


Rare Advocates Shine at the Rare Diamond Awards
The Rare Diamond Awards Gala Dinner took place on 15 September 2018 at the Indaba Hotel in Fourways. Created by Rare Diseases South...

Rare Diseases SA
Sep 25, 20182 min read


Megan is always in good spirits. Megan Fisher on #Syringomellia
Megan Fisher is a beautiful and happy 7 year old little girl. One day Megan came home from school and complained that her legs really...

Rare Diseases SA
Sep 25, 20182 min read


She still manages to smile beyond all her challenges #aHUS
Limari Rouxlé van Romburgh was born on the 7th of March 2017. At 3 months old she had a chest/respiratory infection. She was listless and...

Rare Diseases SA
Sep 21, 20181 min read


I am strong and will get through anything coming my way!!!
By Samuel Nicolas Broekman My Mom and Dad wanted another baby and were blessed in April of 2014 to find out that another baby was on the...

Rare Diseases SA
Sep 20, 20185 min read


I am extremely grateful that he is able to live a normal live given all the circumstances-Hardus
My son Hardus Scholtz was born at 38 weeks with a birth weight of 2.49 kg, healthy and nursing well. (He was the only one oF my 3...

Rare Diseases SA
Sep 19, 20182 min read


They see a child who cannot speak, I see a miracle that does not need words. My Angel Gabriel
Meet Gabriel: Born in February 2002, miracle child of mine! “ I thought I would have to teach my child about the world. Turns out I have...

Rare Diseases SA
Sep 19, 20186 min read
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