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
Tue, 08 JulOnline PlatformsBereaved Parents Awareness Month is dedicated to raising awareness about the grief parents go through after the unfortunate loss of a child and the kind of support needed to overcome this unimaginable grief.
Tue, 08 JulOnline PlatformsArthritis does not pick any age, let's use the seventh month of the year to honour the brave children dealing with this autoimmune disease.
Tue, 08 JulOnline PlatformsNational Cleft and Craniofacial Awareness and Prevention Month is an opportunity to raise awareness and improve understanding of orofacial clefts, clefts of the lip and palate, and other conditions of the head and face.
Tue, 08 JulOnline PlatformsArachnoiditis is a rare condition that happens when there’s inflammation of the arachnoid. The arachnoid is one of the membranes that surround and protect the spinal cord and its nerves.
Tue, 22 JulOnline PlatformsNational Fragile X Awareness Day is observed on July 22 every year. The objective of the day is to raise awareness about Fragile X syndrome (F.X.S.). F.X.S. is the “most common inherited cause of autism and intellectual disabilities worldwide.” It has no cure at present.
Wed, 23 JulOnline PlatformsAcute necrotizing encephalopathy, is a rare type of encephalopathy characterized by multiple bilateral brain lesions, mainly involving the thalami, but also the putamina, internal and external capsules, cerebellar white matter, and the brainstem tegmentum.
Wed, 23 JulOnline PlatformsWorld Castleman Disease Day is recognised each year on July 23 by the entire CD community — patients, loved ones, physicians and researchers. It marks a time when everyone unites to build greater awareness for Castleman disease, to support patients who are living with this disease.
Mon, 28 JulOnline PlatformsWorld Hepatitis Day is held each year to raise awareness about hepatitis, a group of infectious diseases that attack the liver and affect people all over the globe. The day also promotes testing and prevention for all five types of the disease: A, B, C, D and E.
Fri, 01 AugAwareness DayRheumatic fever is an inflammatory disorder that affects the body's connective tissue, resulting in temporary painful arthritis and other symptoms.
Fri, 01 AugOnline PlatformsAutoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood.
Fri, 01 AugOnline PlatformsSpinal Muscular Atrophy Awareness Month is to raise awareness of the condition caused by the deficiency of a motor neuron protein called SMN and other rare forms of Spinal Muscular Atrophy (SMA) that stem from chromosome mutations.
Fri, 01 AugOnline PlatformsGastroparesis Awareness Month, focuses attention on important health messages about gastroparesis diagnosis, treatment, and quality of life issues. The goals include improving understanding of gastroparesis to help patients and families.
Sun, 26 OctJohannesburgRide 97 km of traffic-free Joburg streets on your bicycle, using your mobility for the #1in15 South African affected by rare diseases. Sunday 26 October 2025, FNB Stadium, Johannesburg.