top of page

blog
Search


Burden of Rare Diseases in the USA almost $1 Trillion in 2019
The total economic burden for Rare Diseases in the United States of America for 2019 came to almost $1 Trillion! That is according to the...

Rare Diseases SA
Mar 31, 20213 min read
65 views
0 comments


Invisible Value Syndrome
It sounds a lot like a rare disease… but it’s neither a disease, nor is it rare. It’s an unfortunate mentality that exists surrounding...

Rare Diseases SA
Mar 9, 20213 min read
183 views
0 comments


Rare Lives Matter
“It doesn’t affect me, so I don’t have the capacity to deal with it right now” ~ All of us (at some point in our lives) We don’t believe...

Rare Diseases SA
Jan 24, 20213 min read
149 views
0 comments


Teaching With Alternative Communication - Nova School
If there is one thing people quickly learn about the Rare Diseases community, it's the resilience, tenacity and determination to make...

Rare Diseases SA
Jan 19, 20212 min read
235 views
0 comments


Healthcare Funding and Resources – SA’s ‘Other’ Pandemic
South Africa’s GDP allocation to healthcare research is under 0.3% - a far cry from where it should be.

Rare Diseases SA
Dec 15, 20203 min read
64 views
0 comments


Universal Health Care in South Africa - what do we need to strive for?
In September 2019, Member States of the United Nations, including South Africa, signed the most comprehensive and ambitious declaration...

Rare Diseases SA
Dec 12, 20202 min read
86 views
0 comments


5 Things Rare & Chronic Illness Patients hope you will understand better after Covid-19
"State of Emergency" is a permanent way of life for rare and chronically ill patients.

Rare Diseases SA
Dec 8, 20204 min read
276 views
0 comments


Advocacy – what is that?
WHAT IS ADVOCACY? Whilst we are spending the month of Feb re-framing what the world thinks about Rare, we thought we spend just one day...

Rare Diseases SA
Feb 5, 20204 min read
27 views
0 comments


Rare Diseases SA responds to signing of Presidential Health Compact 25 July 2019 – Pretoria
Rare Diseases South Africa (RDSA) has released the statement below in response to the signing of the Presidential Health Compact and in...

Rare Diseases SA
Aug 14, 20191 min read
14 views
0 comments


Girl with Rare Condition makes Teddy Bears to hide IV Bags for Paediatric patients
A 12-year-old American girl has come up with an ingenious product to ease the anxieties of paediatric patients just like her. Ella Casano...

Rare Diseases SA
Aug 14, 20191 min read
24 views
0 comments
bottom of page