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patient voices

ambassadors

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The Patient Voices programme has been developed with the aim of ensuring that our work is continuously shaped by the patients we represent.

This project allows the patient community to assist Rare Diseases South Africa in:​

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  • developing new resources

  • influencing policy development

  • providing insight to patient medication and device development

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  • providing extended peer-to-peer support to ensure that patients do not feel isolated 

  • helping us raise awareness of rare and genetic diseases across South Africa

meet our amazing patient
voices ambassadors
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CHROMOSOME DISORDER

Kim Kinsella

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CYSTIC FIBROSIS

Rida Viljoen

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DYSAUTONOMIA

Aaliya Essack

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DYSAUTONOMIA

Khadeeja Munchi

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EHLERS DANLOS SYNDROME/RAYNAUDS

Elindi Van Den Heever

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HUNTINGTONS DISEASE

Anne-Marie Ungerer

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HOLOPROSENCEPHALY

Veronica Nel

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IDIOPATHIC INTRACRANIAL HYPERTENSION

Chante Swart

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INTERSTITIAL LUNG
DISEASE

Leilanie Crofton-Ball

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MARFAN SYNDROME

Narishka Fourie

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MOEBIUS SYNDROME

Miracle May

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MUCOPOLYSACCHARIDOSIS

Diane May

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MYASTHENIA GRAVIS

Candice Mes

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POMPE DISEASE

Jean-Mari van Zyl Smit

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PRADER-WILLI SYNDROME

Karin Clarke

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SICKLE CELL ANAEMIA

Nabeelah Peerbhai

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SPINAL MUSCULAR ATROPHY

Tasnim Jadwat

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STEVENS JOHNSON SYNDROME (SJS)

Silindile Bembe

"Nothing can stand in the way of the power of millions of voices calling for change.”

~ Barack Obama

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we need you to be
a voice for change
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Contact us

Telephone +27 10 594 3844
Hotline 072 476 7552

hello@rarediseases.co.za

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Physical Address

Kingfisher House, 39A Kingfisher Road, Fourways 2191 Johannesburg,

South Africa

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

Kingfisher House, 39A Kingfisher Road, Fourways, 2191, South Africa 

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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