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Rare Diseases South Africa fights to have rare diseases recognised and treated.
By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the South African rare disease community
Rare Diseases South Africa strengthens the patient voice and shapes research, policies and patient services.
Improving quality of life takes advocacy, support for research and medicine development, facilitating networking amongst patient groups and caregivers,raising general awareness with key stakeholders and the broader community and providing a platform for key discussions when it comes to inclusive healthcare.
Today, as a voice for vulnerable communities, Rare Diseases South Africa brings international best practice and local innovation together in terms of medicalintervention and treatment, drives a collective voice for medical advancement and support and advocates the right to medical advice and assistance –playing a fundamental role in bridging the gap between vulnerable communities and medical advancement.
All the funds are being collected to start a procurement fund for high cost medicine for patients impacted by rare diseases.
In South Africa, we have no formalized Rare Diseases policy. Our government and medical aids are turning a blind eye to the thousands of patients with rare diseases. This community is simply being ignored and told that their medications are “too expensive.”
If we can raise enough (R100 million to be exact), we will be able to kick start a risk equalization fund which will spread the cost of treating these diseases evenly across the private and public sectors.
It will also allow us to centralize procurement giving us buyers advantage and bargaining power to better negotiate pricing.
Yes, it’s ambitious. But we believe our patients deserve access to healthcare.