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, 02 JunOnline PlatformsInfertility Awareness Month is observed every June to raise awareness about infertility issues, educate the public, and support those affected by fertility challenges.
Tue, 02 JunOnline PlatformsChronic Migraine Awareness Month (MHAM) is dedicated to raising awareness about chronic migraines and headaches, which are significant health issues affecting millions worldwide. The month includes various activities and events aimed at educating the public, addressing stigma, and supporting patient
Tue, 02 JunOnline PlatformsDravet Syndrome Awareness Month is observed every June to raise awareness, support families, and promote research for this rare and severe form of epilepsy.
Tue, 02 JunOnline PlatformsMyasthenia Gravis Awareness Month is observed every June to educate the public, support patients, and promote research on this rare neuromuscular autoimmune disease.
Tue, 02 JunOnline PlatformsScleroderma Awareness Month is observed to raise awareness about scleroderma, a rare autoimmune disease, and to promote education, advocacy, and research.
Wed, 17 JunOnline PlatformsWorld CDKL5 Awareness Day is celebrated to raise awareness about CDKL5 Deficiency Disorder (CDD). The community comes together to promote awareness, research, collaboration, and fundraising efforts.
Fri, 19 JunOnline PlatformsWorld Sickle Cell Day is observed annually to raise awareness about sickle cell disease (SCD), a common blood disorder that affects millions worldwide. The day aims to educate the public about SCD, its impact on patients and their families, and the challenges faced in diagnosis and treatment
Sat, 20 JunOnline PlatformsWorld FSHD Day is held every year and aims to raise awareness for this debilitating form of muscular dystrophy.
Sat, 20 JunOnline PlatformsNystagmus Awareness Day is observed annually to raise awareness about nystagmus, a condition characterized by involuntary eye movements that can significantly impact vision.
Sun, 21 JunOnline PlatformsSYNGAP Day is celebrated to raise awareness about the SYNGAP1 gene mutation, which is associated with various neurological disorders
Sun, 21 JunOnline PlatformsGlobal ALS/MND Awareness Day every June 21 to raise awareness, inspire hope for better treatments and a cure, and work toward a future free of ALS/MND. The day is also an opportunity to honor caregivers.
Tue, 23 JunOnline PlatformsXLH Awareness Day is an annual event that raises awareness about X-linked hypophosphatemia (XLH), a rare genetic condition that affects bone, muscle, and teeth health. The day is dedicated to educating the public about the condition and celebrating those who are #XLHStrong.
Thu, 25 JunOnline PlatformsWorld Vitiligo Day, observed on June 25, aims to raise awareness about vitiligo, a skin condition affecting 1-2% of the global population, and to support those living with it.