We are offended that in South Africa, we have no formalised Rare Diseases policy.
We are offended that our government and medical aids are turning a blind eye to the thousands of patients impacted by a rare disease.
We are offended that this community is simply being ignored and told that their medications are "too expensive" and their healthcare needs too vast to warrant any action.
So here we are again .Offending people with our explicit language. Why? Because giving a f**k can make the world of difference to rare disease patients in South Africa.
If you’re as effing mad as we are at this situation, pledge to use your #SwearingForCaring
on 28 November, as part of Giving Tuesday, and use your #ProfanitiesForPurpose
Create a swear jar for your workplace
Share you #GivingAFuck on Social Media
Encourage your friends and family to participate
With the pandemic forcing us to take extra measures in protecting ourselves and others, we realise a physical swear jar may not be possible as your team works remotely. But we've got your back. Start your own virtual swear jar with the GivenGain Foundation.
In South Africa, we have no formalised 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 centralised 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.
All the funds are being collected to start a procurement fund for high cost medicine for patients impacted by rare disease.