Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life.
Despite this, there is no or limited treatment options for the majority of rare diseases and many go undiagnosed.
Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
28/02/2020 – 01/03/2020
Has been a taxing, albeit simultaneously beautiful and successful period. Of course not without your extended support.
To wrap up the series of events we’d like to acknowledge, commend, and thank all who stood with us to #ReframeRare. A HUGE
Thank you to everyone who liked, shared, commented, interacted or supported us in whichever way was possible.
Thank you for taking out time from the hustle bustle of our crazy lives to show your #Care4Rare.
Your efforts do not go by unnoticed and it truly means the world to individuals who are “orphaned” and feel the pangs of isolation due to a lack of overall medical attention.
Indeed! It is greatly appreciated. May the joy you’ve brought to us be returned upon you in manifold ๐
A special note of extreme appreciation to Dr M for her generosity and kindness of the following gesture:
Dr M: Dearest Khadeejah ๐
R u still selling the rare disease ribbons? Wld like to purchase some pls, or help u sell them at my practice
Khadeeja: yes i still have so much ๐
Not many people bought ๐
Khadeeja: Jazakillah soooooo much. Makes me SO SO happy
Will get them over to you asap
Dr M: Leave as many as u can with me. Will sell them at the clinics. We can call it awareness … So will b sold throughout the months. Send me the banking details or I cld ewallet
Khadeeja: You honestly have NO idea how much this means
May Allah reward you with only the best of both worlds
I then went onto sharing the light of her kindness with followers:
While all the excitement builds on higher, I’m sure all ambassadors can vouch about the energy that simultaneously drains from us towards the climax of #RareDiseaseDay ๐คฉ
Although discussions and preparations began prior to the onset of February, the final week calls for pumping adrenaline ๐
So this afternoon after many late nights and early mornings of planning, writing, coordinating, arranging and posting, i brought my yoga mat outside (daily grounding routine), switched off and sat for a few minutes of reflection, contemplating over all that’s been done thus far, feeling a little disheartened over the lack of ribbon sales but optimistic regarding the overall result knowing that NO service towards humanity ever goes by in vain.
I reminded myself of the many breakthroughs that transpired in 2019 and remain hopeful the same can happen some time now…
Over an hour later, one of my Drs messaged to say that she will collect whatever ribbons are left and if there’s anything else to go along, she’ll put it in her practice and encourage people to support our endeavors, not only now but throughout the year.
I read her messaged and my eyes instantly brimmed with unexplainable tears of joy ๐ญ๐ May such souls be rewarded with only the best of both worlds
The next day she follows up:
Dr M: How u Dearest Khadeejah?
Big day tomorrow โค๏ธ
May Allah grant success & awareness Ameen.
I made payment not sure if it went thru. They said 12hrs.
Khadeeja: Ok no problem. Jazakillah khair. Will let them know
Dr M: ๐ If it hasnt will redo payment InshaAllah. Made payment of…..โฃ๏ธ
To my most ardent supporters and dearest Dr who’s support and love throughout my 5 year journey remained unconditional
A special shout out to the team members for their efforts as well as the much needed fuel me ups that made us push through the month successfully, fatigued or however it be.
It takes the willpower and generosity of our champion, patient leaders, volunteers, supporters, and donors to work and break through Dys lack of knowledge and resources about Rare Diseases in South Africa ๐ช
๐๐ง๐ฌ๐ฎ๐๐๐ข๐๐ข๐๐ง๐ญ ๐ฐ๐จ๐ซ๐๐ฌ ๐ญ๐จ ๐๐๐ฌ๐๐ซ๐ข๐๐
๐๐ฒ appreciation ๐๐จ๐ซ ๐ญ๐ก๐ข๐ฌ ๐ญ๐ซ๐ข๐๐
This is what it means to love someone with a rare disease / disorder and your actions have proved the variations of love for our community.
Although the official rare disease awareness month has terminated, our fight continues 24/7. We will continue to #ReframeRare on a daily basis. The potential change for things to work in our favor lies in our hands. We are needed here and we pledge our abilities be used for the upliftment of humanity. Our hearts will forever beat in sync to live and abide by the spirit of Ubuntu โจ
Sincerely yours
Rare Voices
Swimming Through The Waves 