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Survivor Star Tackles Most Dangerous Peak for Dread Diseases
Nicole Capper has a number of titles to her name, including Mrs South Africa (2018), Functional Medicine pharmacist, model, MC and...
Rare Diseases SA
May 27, 20192 min read
6.9 million People worldwide have a bleeding disorder, 75 % of them do not know it!
WORLD HEMOPHILIA DAY 17th April 2019: “Reach OUT : The FIRST STEP to CARE” Lets Change the World for ONE PERSON at a time and help reduce...
Rare Diseases SA
Apr 17, 20193 min read
2019 DECLARATION OF CHILDREN’S RIGHT TO PALLIATIVE CARE
PatchSA are calling on all South African’s to sign the Declaration, to show support for the right of every child in South Africa to...
Rare Diseases SA
Apr 17, 20193 min read
HIGH LEVEL NATIONAL STAKEHOLDER MEETING FOR CHILDREN WITH SERIOUS ILLNESS
On 18 March, a high level national stakeholder meeting for children with serious illness took place in Johannesburg. Rare Diseases SA was...
Rare Diseases SA
Apr 9, 20192 min read
Rare Diseases in South Africa: Bridging the Gap for Inclusive Healthcare
Rare diseases are an area of healthcare which has been neglected in the past, predominantly due to the high cost of drug research and the...
Rare Diseases SA
Mar 7, 20191 min read
The Inspiration Effect
If you inspire people, then they inspire other people and then it just keeps going on so that it just helps everybody. These are the...
Rare Diseases SA
Feb 26, 20192 min read
Denim Walk to Raise Funds and Awareness for Rare and Genetic Diseases
Rare Diseases South Africa (RDSA), in conjunction with the Genetic Alliance South Africa (GA-SA), are supporting those affected by rare...
Rare Diseases SA
Feb 7, 20192 min read
Dear Ride4Rare Team
I can’t believe that this year is our 7th year doing this crazy race. Every year, we swear we will get fitter, earlier – we don’t. Every...
Rare Diseases SA
Nov 16, 20182 min read
Introducing a new way to spend your Wednesday!
We know how difficult it is to attend patient meetings / workshops / conferences etc. Let’s be honest, we lucky if we make it to all our...
Rare Diseases SA
Nov 2, 20181 min read
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
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
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
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
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
Things to take your Chronically Ill friend in hospital
When you first get sick, the amount of cards, flowers & visits is almost such that you can’t keep up with everything. There isn’t a day...
Rare Diseases SA
Aug 21, 20186 min read
Telkom 947 Cycle Challenge . . . seven years and counting!
It’s hard to believe that 2018 marks the seventh year that we’re participating in the Telkom 947 Cycle Challenge; and once again, we...
Rare Diseases SA
Aug 14, 20181 min read
RareX: a key forum for the global rare diseases community
RareX 2018 brings together a broad range of South African, African and international rare diseases communities, under the conference...
Rare Diseases SA
Aug 14, 20181 min read
Your support meant we could help this little guy with a big spirit
Little Matthew has a disease with an enormous name: Mucopolysaccharidosis IV. MPS IV (or Morquio syndrome as it’s also known) is an...
Rare Diseases SA
Aug 14, 20182 min read
Shine on in the Rare Diamond Awards
Have you bought your ticket to the Rare Diamond Awards yet? At just R400 per person for dinner and a night of glitz, glamour,...
Rare Diseases SA
Aug 14, 20181 min read
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