How to join the movement in SA?
1) Denim walk event in gauteng 👇
Kindly click on the link to purchase a ticket for the event
http://www.rarediseases.co.za/shop
All funds collected, are strictly directed towards improvement of health policies & patient care management.
Your donations will go a long way & provide assistance to those affected by conditions that lack adequate resources & awareness.
RDSA works not only on a national, but international level as well, to co-operate ideas & get things going.
Here’s a proof to show you that the funds are not being self pocketed 😆
2) Purchase a ribbon to wear for only R10 per sticker
From any of our rare disease day 2019 ambassadors.
I’m an ambassador on the East rand, kindly message or email if you’re also on this side & interested in showing your care for rare.
The picture with each ambassadors details are a bit vague on the pic below.
Kindly click onto the following link to see who to purchase from in your area.
https://www.rarediseases.co.za/
Many are asking what purpose does the ribbon serve?
Well, it’s quite a simple concept..
Just as the pink ribbon is set in common for breast cancer awareness etc.. This is the same but a different color –
Blue Jeans Denim Ribbon to denote Genetic disorder awareness. The blue jeans denim ribbon was created by the Global Genes Project and the Children’s Rare Disease Network for awareness of gene defects.
Also each year, the funds collected from these events are channeled towards a particular aspect… For example; last years outstanding feature was Research.
3) Organize an event
This is something I’d love to do for patient empowerment but unfortunately, activity constraints & limitations are against me…
If anyone else would like to host or help arrange one.. Please let me know
In the meantime, the @we_fight_dys team is working on producing my little (lol secret) initiative as an easier method for me to add my extra share of contribution towards the community, it will be launched as soon as we’re ready.
God willing.
4) Get our schools involved
This is a very important matter!
Recently, the story of a 10 year old child who committed suicide made headlines in our chronic community.
He could no longer handle the incessant taunts of other kids upon him due to having a feeding bag for survival… Tragically, it lead him to ending his life.
It’s vital for the normal masses of kids to learn, be aware, kind, considerate & acceptive of other kids with rare diseases or special needs.
They should not be treated as an outcast, nor should there be any sort of discrimination or isolation.
5) Professionals in the medical sector should get their colleuges & coworkers involved.
We appeal to our communities to spread the word…
Dysautonomia & it’s common types are unheard of here, so the rare one’s mentioned in the previous post, probably sound like a bunch of gibberish.
Spreading any information truly makes a difference & impacts our lives.
A kind request for professionals out there to develop an interest.
To recap
In the words of South Africa’s most talented, humble, sincere & meaningful singer – Zain Bhika:
If you dare
Dare to believe
You will perceive the world differently
Just one heart
One voice
One hand
One smile
One world
From ripples to waves
From whispers to echoes
Love sets us free….
If you dare to believe
One hug can heal another
One hand can lift us higher
One voice brings hope
With one smile we save each other
As we sail
Across the sea of life
So much pain
Warring divides
It’s a shame
We don’t see how it can’t be..
Oh we need to
Smile at each other
Reach for your brother
Help one another
All we need is love…
Oh we need to
Honor our mother
Shelter our sisters
Alter our existence
God’s help will come from up above..
All the games
People playing now
Fuel the flames
Hatred devours
Lets spark a change
That’s within all of us…
Two pics above 👆
Credit of Patient Worthy.
The vision & aspiration for a better health care system
Please help us create a brighter future
Lessen the pain our warriors endure
Swimming Through The Waves 
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