Interview with NPO Rare Diseases South Africa
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We chatted to Rare Diseases South Africa. Get involved. Here are some details.
Rare Diseases South Africa (RDSA), the leading NPO (NPO 120-991), is dedicated to improving the quality of life for individuals affected by rare diseases and congenital disorders. The organisation plays a critical advocacy role by influencing policy and healthcare delivery to ensure that rare disease patients are not excluded from systems such as the National Health Insurance (NHI). Through its patient navigation service, “Rare Assist,” RDSA provides free case management support to help patients navigate medical aid claims, authorisations, and specialised applications. There are several ways to get involved: supporters can participate in fundraising through the Rare ACTIVist programme by taking part in athletic events like the Two Oceans Marathon or the Cape Town Cycle Tour, make voluntary donations to sustain patient services, or volunteer as “Charity Champions” by offering their time and expertise. RDSA also manages the Rare Bear Project, a community support initiative that empowers women through craftwork to create gifts for rare disease patients while generating income.
Key Contact Information for Rare Diseases South Africa (NPO 120-991):
Email: hello@rarediseases.co.za mailto:hello@rarediseases.co.za
Telephone: +27 10 594 3844
Hotline (Urgent Support): 072 476 7552
Website: https://www.rarediseases.co.za/
Rare Diseases South Africa (RDSA), the leading NPO (NPO 120-991), is dedicated to improving the quality of life for individuals affected by rare diseases and congenital disorders. The organisation plays a critical advocacy role by influencing policy and healthcare delivery to ensure that rare disease patients are not excluded from systems such as the National Health Insurance (NHI). Through its patient navigation service, “Rare Assist,” RDSA provides free case management support to help patients navigate medical aid claims, authorisations, and specialised applications. There are several ways to get involved: supporters can participate in fundraising through the Rare ACTIVist programme by taking part in athletic events like the Two Oceans Marathon or the Cape Town Cycle Tour, make voluntary donations to sustain patient services, or volunteer as “Charity Champions” by offering their time and expertise. RDSA also manages the Rare Bear Project, a community support initiative that empowers women through craftwork to create gifts for rare disease patients while generating income.
Key Contact Information for Rare Diseases South Africa (NPO 120-991):
Email: hello@rarediseases.co.za mailto:hello@rarediseases.co.za
Telephone: +27 10 594 3844
Hotline (Urgent Support): 072 476 7552
Website: https://www.rarediseases.co.za/
