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webinars

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.

 

Register for an upcoming webinar or follow our Facebook page for updates and webinar details.

upcoming webinars

  • #Run4Rare TTOM 2025
    #Run4Rare TTOM 2025
    Sat, 05 Apr
    Cape Town
    05 Apr 2025, 05:00 – 17:00
    Cape Town, Cape Town, South Africa
    05 Apr 2025, 05:00 – 17:00
    Cape Town, Cape Town, South Africa
    Total Sports Two Oceans Marathon 2025 is an opportunity to use your mobility to benefit others - our rare diseases community! Purchase your entries today to take part in the worlds most beautiful marathon!

past webinars

  • The South African 110 000 Human Genomes Project
    The South African 110 000 Human Genomes Project
    Wed, 13 Nov
    Teams Webinar
    13 Nov 2024, 11:00 – 12:00
    Teams Webinar
    13 Nov 2024, 11:00 – 12:00
    Teams Webinar
    Join us on for an insightful webinar on the highly anticipated South African 110,000 Human Genomes Project. Ms. Mia is coordinating this groundbreaking initiative and brings firsthand knowledge of the intricacies of this project. What could this mean for all South Africans? Register and find out!
  • National Inherited Disorders Day
    National Inherited Disorders Day
    Tue, 01 Oct
    Awareness Days
    01 Oct 2024, 00:00 – 23:50
    Awareness Days
    01 Oct 2024, 00:00 – 23:50
    Awareness Days
    Inherited disorders according to the head of Science Retina South Africa, Claudette Medefindt cover a huge diversity of diseases that affect millions worldwide. “They can cause serious health issues. Genetic components have been implicated in cancer, heart disease, Diabetes, mental health and blin
  • World Heart Day
    World Heart Day
    Sun, 29 Sept
    Awareness Days
    29 Sept 2024, 00:00 – 23:50
    Awareness Days
    29 Sept 2024, 00:00 – 23:50
    Awareness Days
    Every year, over 17 million people die from heart disease. As a way to fight this, the World Heart Federation created World Heart Day. It’s an event held every year on September 29.
  • World Lung Day
    World Lung Day
    Wed, 25 Sept
    Awareness Days
    25 Sept 2024, 00:00 – 23:50
    Awareness Days
    25 Sept 2024, 00:00 – 23:50
    Awareness Days
    The respiratory conditions have a significant societal and economic cost, with the burden negatively affecting healthcare systems, impacting the lives of patients and their families, lowering productivity, and widening the gap in life expectancy between the poorest and wealthiest. A significant prop
  • Usher Syndrome Awareness Day
    Usher Syndrome Awareness Day
    Sat, 21 Sept
    Awareness Days
    21 Sept 2024, 00:00 – 23:50
    Awareness Days
    21 Sept 2024, 00:00 – 23:50
    Awareness Days
    Usher Syndrome Awareness Day is observed on the third Saturday of September and falls on September 21 this year. This rare genetic disease has long gone unrecognized, but many are working hard to bring it to light. Usher syndrome affects eyesight, hearing, and mobility
  • A Movement Disorder NPO FOCUS Event
    A Movement Disorder NPO FOCUS Event
    Wed, 18 Sept
    Microsoft Teams
    18 Sept 2024, 19:00 – 20:30
    Microsoft Teams
    18 Sept 2024, 19:00 – 20:30
    Microsoft Teams
    The webinar hosted by Dr Nelia Drenth aims to help carers and families deal with the long-term suffering of their loved ones and prepare them for the inevitable death and the trauma that goes with the long-term suffering.
  • Rare Diseases Advisory Board - Is there a need?
    Rare Diseases Advisory Board - Is there a need?
    Wed, 18 Sept
    Zoom
    18 Sept 2024, 18:00 – 19:30
    Zoom
    18 Sept 2024, 18:00 – 19:30
    Zoom
    We are excited to announce the potential establishment of an Independent South African Rare Disease Advisory Board and would like to invite you to join us for an open discussion on its need, structure, governance, and setup.
  • World Patient Safety Day
    World Patient Safety Day
    Tue, 17 Sept
    Awareness Days
    17 Sept 2024, 00:00 – 23:50
    Awareness Days
    17 Sept 2024, 00:00 – 23:50
    Awareness Days
    World Patient Safety Day takes place annually on September 17 to raise awareness and drive worldwide intervention for the safety of patients. The observance inspires countries across the globe to prioritize patient safety in the healthcare system.
  • World Lymphoma Awareness Day
    World Lymphoma Awareness Day
    Sun, 15 Sept
    Awareness Days
    15 Sept 2024, 00:00 – 23:50
    Awareness Days
    15 Sept 2024, 00:00 – 23:50
    Awareness Days
    This year will be the 20th anniversary of World Lymphoma Awareness Day. For over two decades, we’ve raised a lot of awareness about lymphomas and the needs of patients and caregivers. This year we’re focused on the emotional effects of living with lymphoma.
  • World Sepsis Day
    World Sepsis Day
    Fri, 13 Sept
    Awareness Days
    13 Sept 2024, 00:00 – 23:50
    Awareness Days
    13 Sept 2024, 00:00 – 23:50
    Awareness Days
    Sepsis arises when the body’s response to an infection injures its own tissues and organs. It may lead to shock, multi-organ failure, and death – especially if not recognized early and treated promptly. Sepsis is the final common pathway to death from most infectious diseases worldwide.
  •  Medical Aid Madness: Are Your Benefits Burning You Out?
     Medical Aid Madness: Are Your Benefits Burning You Out?
    Wed, 21 Aug
    MS Teams
    21 Aug 2024, 19:00 – 20:00
    MS Teams
    21 Aug 2024, 19:00 – 20:00
    MS Teams
    Join our webinar to unravel the complexities of your medical aid! Learn strategies to prevent flare-ups and maximize your benefits with expert guidance. Don’t let confusion compromise your care—master your medical aid and stay healthy! Secure Your Spot Now! Transform how you handle your health cove
  •  Primary Mitochondrial Disease – A Global Energy Crisis
     Primary Mitochondrial Disease – A Global Energy Crisis
    Tue, 04 Jun
    Zoom Webinar
    04 Jun 2024, 11:00 – 12:00
    Zoom Webinar
    04 Jun 2024, 11:00 – 12:00
    Zoom Webinar
    Join us this June for an intriguing webinar featuring Professor Rahman and Mrs Meldau as they delve into the depths of primary mitochondrial disease. Gain unique insights from their expertise as they unravel the complexities of this condition.
  • Understanding Pulmonary Fibrosis
    Understanding Pulmonary Fibrosis
    Tue, 28 May
    Zoom
    28 May 2024, 19:00 – 20:00
    Zoom
    28 May 2024, 19:00 – 20:00
    Zoom
    Interstitial lung disease (ILD) serves as an overarching term encompassing a diverse array of conditions characterized by the scarring, or fibrosis, of lung tissue. Among these conditions lies pulmonary fibrosis, a specific affliction where the lungs progressively develop scar tissue over time.
  • World Health Day
    World Health Day
    Sun, 07 Apr
    Awareness Days
    07 Apr 2024, 00:00 – 23:50
    Awareness Days
    07 Apr 2024, 00:00 – 23:50
    Awareness Days
    World Health Day, celebrated annually on April 7th, promotes global awareness and action on pressing health issues.
  • World Autism Day
    World Autism Day
    Tue, 02 Apr
    Awareness Days
    02 Apr 2024, 10:08 – 23:50
    Awareness Days
    02 Apr 2024, 10:08 – 23:50
    Awareness Days
    World Autism Awareness Day on April 2nd promotes acceptance, inclusion, and understanding of individuals with autism worldwide.The date of World Down Syndrome Day was chosen to represent the uniqueness of the triplication
  • Purple Day for Epilepsy
    Purple Day for Epilepsy
    Tue, 26 Mar
    Awareness Days
    26 Mar 2024, 00:00 – 23:50
    Awareness Days
    26 Mar 2024, 00:00 – 23:50
    Awareness Days
    Purple Day is a global grassroots movement dedicated to raising awareness about epilepsy.
  • World Down Syndrome Day
    World Down Syndrome Day
    Thu, 21 Mar
    Awareness Days
    21 Mar 2024, 00:00 – 23:50
    Awareness Days
    21 Mar 2024, 00:00 – 23:50
    Awareness Days
    World Down Syndrome Day (WDSD), observed on March 21, is a global awareness day recognise since 2012. World Down Syndrome Day (WDSD), observed on March 21, is a global awareness day recognise since 2012. The date of World Down Syndrome Day was chosen to represent the uniqueness of the triplication
  • World Kidney Day
    World Kidney Day
    Thu, 14 Mar
    Awareness Days
    14 Mar 2024, 00:00 – 23:50
    Awareness Days
    14 Mar 2024, 00:00 – 23:50
    Awareness Days
    Today, we honour and raise awareness about the importance of kidney health worldwide.

Webinars

Webinars

Webinars
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Understanding Clinical Trials

Understanding Clinical Trials

01:12:43
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Understanding Section 21 and off-label products

Understanding Section 21 and off-label products

01:06:40
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Getting to know ITP & MF

Getting to know ITP & MF

01:04:20
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