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TELL
On Tuesday night, a New Organ and Tissue Donation NPO, Tell, launched in Johannesburg. Various physicians, surgeons, professors, key...
Rare Diseases SA
Oct 18, 20185 min read
NEVER NEVER GIVE UP!!!!!!!!! Dante’s Journey with Schinzel-Giedion syndrome
Danté’s life journey started on 31 March 2015 and the doctors immediately noticed that something was not intact so he was admitted to...
Rare Diseases SA
Oct 18, 20189 min read
It is all about winning!! – written by Dad
I played cricket for many years and always took Russell, my #DownSyndrome son to the league matches so it was inevitable that he would...
Rare Diseases SA
Oct 18, 20181 min read
Learning With Leah..
My name is Salomie Crawford I am now 33 years old 12 years ago, I gave birth to a little girl she was my first baby and we named her Leah...
Rare Diseases SA
Oct 18, 20186 min read
We can see a glimmer in his eye and know things are about to change. #SSPE
Ryan had measles when he was 9 months old (before his vaccine was due) and was admitted to hospital and recovered and lived a normal...
Rare Diseases SA
Oct 15, 20183 min read
Update on PMB Review Process
As you may know, Kelly was asked to present to the PMB Review committee on rare diseases. The content of the presentation was very well...
Rare Diseases SA
Oct 15, 20183 min read
Our Brave and Always Smiling Warrior Björn
We were blessed with the wonderful news of being pregnant six months after I had a miscarriage. We had to take precautions so I was on...
Rare Diseases SA
Oct 12, 20185 min read
Surrogacy journey with Pompe Disease
Personal message In 2013 I was diagnosed with a rare Disease called Pompe Disease. Luckily Pompe Disease is a PMB so my medical aid helps...
Rare Diseases SA
Oct 12, 20181 min read
World IDIC15 Awareness Day
Bailey is 10 years old and has IDIC15, Isodicentric 15 which means she has extra copies of Chromomosome 15. There are approximately less...
Rare Diseases SA
Oct 10, 20181 min read
Nathan is truly a living testimony of faith, acceptance, courage and determination!
The story of Nathan Struwig Living with #SpinaBifidaMyelomeningocele and #Hydrocephalus 27/09/2018 The story of Nathan. A living...
Rare Diseases SA
Oct 10, 20182 min read
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