KEEP UP TO DATE
Big things are happening in the HAE Community!
This page is updated regularly to include our latest HAE news and events,
so please be sure to check back from time to time to keep up with our latest news.
ONLINE MEDICAL CARE TO SAVE LIVES:
FIRST Virtual Angioedema Centre Launches in SA FOR RARE DISEASE MONTH
HAE South Africa has announced the launch of a highly innovative new support centre for people with angioedema for Rare Disease Day on the 28th of February.
The Sinovuyo South African Virtual Angioedema Centre in Cape Town is the first of its kind in Africa – the second of its kind in the world – and promises to not only educate and advise but save lives. The centre is virtual and online, utilizing a proprietary international-designed cloud-based platform. The expert independent specialist team at the virtual centre offers advice and support for patients with hereditary and other forms of angioedema; their families and carers; medical practitioners; as well as nurses caring for angioedema patients.
RDSA held their Family Day event on the 5th of March 2022 in Johannesburg, where members of the rare disease community and their families came together to enjoy a picnic. The children spent the day playing ball games, enjoying pony rides and feeding the farm animals.
Neil Kinsley, an HAE patient with a family history of the disorder, including his grandmother, father, sister, and daughter, cycled the 94.7 Cycle Race on the 21st of November together with two of his friends, Simon and Barbara Stanbury, to help raise funds used towards improving the quality of life of all patients living with HAE. A total of R14,000 was raised for HAE S.A.
RARE DISEASE DAY takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
RARE DISEASE DAY takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Please check back to see events planned for Rare Disease Day 2022.
HAE DAY
The annual HAE day aims to raise global awareness of HAE. HAE Day unites the HAE community to raise awareness amongst the general public, healthcare professionals, healthcare decision-makers and industry representatives.
In 2020 we celebrated the 10th anniversary of HAE day with our Let’s Take the Next Step activity campaign launched in April 2021.
The activity campaign was to step around the world in time for HAE day on the 16th of May and everyone was encouraged to take part in physical or wellbeing activities and regularly record the time spent on each activity, on the HAE Day website. A total of 61 countries participated, with 7,414 activities and 168,787,911 steps achieved.
HAE DAY
The annual HAE day aims to raise global awareness of HAE. HAE Day unites the HAE community to raise awareness amongst the general public, healthcare professionals, healthcare decision-makers and industry representatives.
In 2020 we celebrated the 10th anniversary of HAE day with our Let’s Take the Next Step activity campaign launched in April 2021.
The activity campaign was to step around the world in time for HAE day on the 16th of May and everyone was encouraged to take part in physical or wellbeing activities and regularly record the time spent on each activity, on the HAE Day website. A total of 61 countries participated, with 7,414 activities and 168,787,911 steps achieved.