217 ~ Reframe rare – 5/7 ~

29/02/2020

Worldwide events took place to celebrate the strength, highlight the challenges, and raise funds to improve the lives of 300 million individuals who live with upto 6000+ identified rare diseases.

Dys is our reality:

Having highlighted the above facts, its never too late to contemplate and celebrate all the hurdles and grueling circumstances you’ve had to undergo in persevering and holding on through a constantly challenging life – where you’ve got to:

Fight for a diagnosis,

Fight for the appropriate symptom management,

Fight for life saving medical treatment,

Fight to have your disability recognized if it’s invisible,

Fight for disability rights,

Fight to maintain a stable financial income to have a roof over your head or support the household,

And most importantly to fight for equity so that all affected individuals are able to recieve the care they deserve.

So let’s celebrate everything we’ve survived and achieved. All the little things count. Allow ourselves credit for where we are now and all the growth that has taken place before heading further on.

Further on, let’s also spare a few moments of prayers for the loved ones of those who’ve been taken away by a rare condition ๐Ÿ’”๐Ÿ’” including the warriors who face premature death or who’s lifespans have been reduced!

On an exciting note:

We are also pleased to announce; on #RareDiseaseDay2020 – our wonder hero (CEO) and passionate advocate mom @kellduplessis was named amongst the 20 Rare Disease champions worldwide ๐ŸŽ‰๐ŸŽ‰๐ŸŽ‰

A huge honor and credit fully deserved for all the unwavering and grueling work she’s done over the past 13 years for all rare patients & their families!

We’re so humbled to be a part of this incredible team and applaud her for all the sacrifice and mental toll it takes to be in such a position. The hope that has extended for us as a result of her presence and tireless efforts is appreciated more than she will ever come to know โœจ

Wishing her strength and success in all future endeavors ๐Ÿ’–๐Ÿ’–๐Ÿ’–

A brief overview of the months activity:

Interviews were conducted on various radio stations and tv channels.

From Kelly:

1) https://youtu.be/Bmnpc_HYQ8s

“Just thought Iโ€™d share one of my fav interviews (because I love Oscar) to encourage you all for your media engagements”

2) Sirius FM by Aqeelah Chouglay who hosted shows throughout the month of February on each Saturday afternoon slot.

3) Link from a 702 interview

http://www.702.co.za/podcasts/110/the-best-of-early-breakfast/290921/3-million-south-africans-expected-to-be-impacted-by-rare-disease

4) SABC 2 interviewed Kelly du Plessisโฉ and Maryke Thomson on the Health Talk Show. Kelly shared information on RDSA and Maryke raised awareness on IIH – Idiopathic Intercranial Hypertension and EES – Empty Sella Syndrome. Segments of pre-recorded interviews with 2 of our other #IIHWarriors played out as well

5) RSG radio

6) Members of the Rare Voices group featured news headlines in their local community newspapers.

One such example being the Benoni city times newspaper:

Morehill resident proudly a rare disease ambassador

7) For facts sake videos presented and shared across social platforms


As of March:

An interview on how load shedding affects our patients who are reliant on medical devices and costly refrigerated medication such as R5000 – R15 000 a month.

The latest being: Kelly in studio this morning at Groot Ontbyt on GROOTfm 90.5 to discuss the wrap up of #RareDiseaseDay and #WorldBirthDefects day which is taking place globally today!

#Awareness #Knowledge #Advocacy

Our aim here as Rare Voices;

Even if some of us have the luxury of affording the exorbitant monthly healthcare expense, we will continue the fight for the majority who do not have medical aid and cannot afford basic necessities, let alone life saving medication… Making them more vulnerable to fall through the cracks of an unsatisfactory system..