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Campaigning For Cancer and Rare Diseases South Africa are pleased to bring you the upcoming Patient Huddle: Capacity Building Exchange Series. 

This series of capacity building engagements seeks to bring together regional and local patient advocacy leaders and nascent patient groups, Patient User Network members and advocates for a program that will allow them to build their understanding and knowledge of the Non-profit organisation framework, share best practices, exchange ideas and get to grips with the potential role they can play as patient advocates. 

The series provides invaluable opportunities to advance partnerships with more established groups and advocate from different disease areas. The programs of the series will include knowledge sharing sessions focused on developing knowledge and skills within nascent patient groups, thought-provoking panel discussions with KOLs, as well as curriculum geared toward advocacy training, and including a format of Roundtable/Workshop discussions with all key stakeholders including local and international speakers. 

The Huddle Exchange Series

  • Sarcoidosis Month
    Sarcoidosis Month
    Wed, 01 Apr
    Online Platforms
    Sarcoidosis Awareness Month, aimed at raising awareness and understanding of this rare inflammatory disease.
  • World Hemophilia Day
    World Hemophilia Day
    Fri, 17 Apr
    Online Platforms
    On April 17, 2026, the global inherited bleeding disorders community will come together on World Hemophilia Day to advocate for all inherited bleeding disorders. This year’s theme of “Diagnosis: First step to care” highlights the critical importance of diagnosis—the essential first step in treatment
  • World PID Week
    World PID Week
    Wed, 22 Apr
    Online Platforms
    World Primary Immunodeficiency Week (World PID Week) is an annual event held from April 22 to April 29. Its mission is to raise awareness about primary immunodeficiencies (PID) and advocate for improved access to diagnosis and treatment. The week features global campaigns and activities aimed at inc
  •   FOP Awareness Day
      FOP Awareness Day
    Thu, 23 Apr
    Online Platforms
    FOP Awareness Day is observed annually on April 23 to raise awareness of fibrodysplasia ossificans progressiva, a rare genetic disorder that causes soft tissues to gradually turn into bone.
  • Immunisation Week
    Immunisation Week
    Fri, 24 Apr
    Online Platforms
    World Immunisation Week is a global campaign that takes place from April 24 to 30 each year. It aims to promote the life-saving power of immunization to protect people of all ages against vaccine-preventable diseases.
  • Malaria Day
    Malaria Day
    Sat, 25 Apr
    Online Platforms
    World Malaria Day (WMD) is an international observance commemorated every year on 25 April to raise awareness and highlight the global efforts against malaria. Globally, 3.3 billion people in 106 countries are at risk of malaria.
  • Undiagnosed Day
    Undiagnosed Day
    Tue, 28 Apr
    Online Platform
    Undiagnosed Day—isn’t just a day, it’s a movement, a day not about the disease, to create awareness and action for People Living With Undiagnosed Diseases (PLWUD). There are too many people living with questions that remain unanswered.
  • International Noise Awareness Day
    International Noise Awareness Day
    Wed, 29 Apr
    Online Platforms
    International Noise Awareness Day (INAD) was established in 1996 by the Center for Hearing and Communication (CHC). The day aims to educate the public about the negative impacts of noise pollution on hearing, health, and overall quality of life. It serves as a global initiative to promote awareness.
  • CF Genes Day 2026 - SACFA
    CF Genes Day 2026 - SACFA
    Fri, 22 May
    CF Genes Day
    SACFA invites schools and companies across South Africa to join in and help raise awareness for Cystic Fibrosis. Your support will contribute to the purchase of essential medical equipment and access to medicine for more than 500 CF patients living in South Africa.
  • Swing for Independence Charity Golf Day
    Swing for Independence Charity Golf Day
    Fri, 12 Jun
    Johannesburg
    Join us for a day on the green that’s more than just golf — it’s about making a tangible difference in someone’s life. The Swing for Independence Charity Golf Day will raise vital funds to support Kerry Walsh, an SMA (Spinal Muscular Atrophy) warrior, motivational speaker, and disability advocate
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Physical Address

Kingfisher House, 39A Kingfisher Road, Fourways 2191 Johannesburg,

South Africa

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

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Rare Diseases South Africa

NPO 120-991

Kingfisher House, 39A Kingfisher Road, Fourways, 2191, South Africa 

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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