How can you help us?
Get involved with the awareness days, share the info, share the stats, lets educate those around us. Tell your colleagues at work about a disease you read about, share your story as a patient, ask questions – you just never know who may desperately need the information that you have seen and remains trapped in your mind.
This is the hardest thing (and not nearly as much FUN as is always promised)– trust us, we know it. We not fans of cupping our hands either. (Can you tell – we so bad at it!) But, truth be told – Money is needed to physically do the things that we need to do. We attend meetings, plan conferences, make phone calls, send emails, host events, take legal action, engage with stakeholders, and generally, try our best to support patients. But to do that, we need travel costs, phones, data, email services, venue fees, catering, legal costs, stationary, an office to all of this in, and most importantly, staff to do it.
What really sucks, is that these cost drivers, don’t help one patient, so it’s not like any single patient will say – Thank you for sponsoring towards RDSA’s telephone bill this month = it changed my life. But, in reality, we all went to the office, made some calls, sent some emails, engaged with funders, submitted to the Medical Controls Council, chatted to the distributors, engaged with the treating doctor, met
with the logistics suppliers, (made some coffee between all of this), and then finally, sent the patient a WhatsApp to let them know their treatment has been approved AND COLLECTIVELY, THAT CHANGED THEIR LIFE.
Our work isn’t always tangible. We don’t provide meals for the hungry, provide beds for the homeless, or education to orphaned children. But we DO facilitate change, provide good support, and give great hugs – What is the Rand value of that?
Attend them. Some are for patients, some are for the public, some are for both. Either way, there is always bound to be something happening that you can attend.
Help us arrange them. Our offices are in Joburg, our patients are all over the country. We need feet on the ground. We like to provide opportunities for our community to meet, such as our family days, but we don’t know suitable places to do these things, and can’t do venue inspections etc, arrange party packs, put up notices in the area, etc prior to this event happening. We can help cover venue costs (finances dependant – refer to point 2), and provide administrative support to get these meetings together, but we physically can’t be everywhere all the time. (Well, not until cloning really takes off). So, until then, we need your help. Sign up as volunteer – tell us where you based, and what you good at, and we will find stuff for you to do.
Register as a member: We can’t support you, if we can’t connect with you.
Tell people who you meet at clinics who also have rare conditions about us too, so that we can support them too.
Respond to our communication. We often need info, and feedback, for various things. Example: A medical aid might be willing to look at putting a team together specifically to handle rare disease patient queries = but, we need to know how many patients are on their scheme – We email you to ask for your medical aid details. You don’t respond. We only have 5 patients who do respond, but we know we have at least 50 patients with the scheme but now we can’t prove it. We go back to the scheme with a list of 5 patients, and the scheme determines it’s not worth getting a dedicated team together for only 5. You, as the patient, are stuck calling a call centre forever.
Tell your doctors about us – They need help getting all the info for your treatment approved at medical aid, this requires manpower, lots of time, and LOADS of patience. We can help (Finance dependant), and may make your doctors life so much easier, allowing him to spend more time saving lives. (And now we have not only positively impacted your life, but that of your doctors, and that of the patient who he has time to see tomorrow instead of next month. Look at us go: Small actions x A lot of people = Big Change!
We realize you may be a patient and don’t have the mobility to run, swim or cycle, or you a mom like me who looks after a patient, and doesn’t have the time (or frankly the energy). But, we have family and we have friends, and we have colleagues. And they are always telling us how strong we are, and how they don’t know how we do it. That’s our chance! Take that moment to say, I know it sucks for us, but you know how you can make it better? We see you have time to go to gym every day, and on the weekend, you out with your mates training for the next Wine2Whales, so, why don’t you make our lives a little easier, by #Riding4Rare. They may not realize how cycling 100km is going to make your life any easier, but you can show them point 2 of this post, and they may just do it. We have ice cream at the finish, and bean bags for them to lick their wounds after. We also a fun group of people, and promise to make it more enjoyable that it would be if they just did the race on their own.
Donate (Not necessarily financially, but if you want too do that too, we wont say no.)
Share our sponsorship documents with your boss, your school, your local businesses that your frequent – you just never know who out there is 1) impacted by a rare condition and may not know about us, 2) is trying to pay less tax and needs to find a CSI initiative (Rare Diseases SA has 100% B-BBEE SED Recognition, and is Section 18A certified with SARS), or 3) is genuinely just generous.
Get a MySchool card, register Rare Diseases as your beneficiary, and you are immediately giving back to us without doing anything different.
Get 5 of your friends or family to become a monthly donor by completing our debit order sign up form online: R50 may be doable for them, and makes a HUGE difference to us.
Friends having a baby? Get them a #RareBear made with love, and big hearts, versus a teddy made in China sold at a massive toy store. The purchase price of the #RareBear allows a woman from Kya Sands to feed her child today, and send them to school. It means another blanket in winter. For the toy store, all it means, is a miniscule reduction to their large profit base. It may even go unnoticed.
Time – Send a loving message to a family you can see is battling, connect with others in the same shoes, we all in this together!