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:

  • developing new resources

  • influencing policy development

  • providing insight to patient medication and device development

  • 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

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ANKYLOSING SPONDYLITIS

Maranda van Dam

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CHROMOSOME DISORDERS

Kim Kinsella

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CUSHING'S SYNDROME

Kristi Kirstein

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DERMAMYOSITIS

Janette Swart

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DYSAUTONOMIA

Aaliya Essack

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EHLERS DANLOS SYNDROME

Ashleigh Paterson

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EPIDERMOLYSIS BULLOSA
 

Dané Rossouw

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FIBRODYSPLASIA OSSIFICANS PROGRESSIVA
 

Flora Senate Rammutle

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GIGANTOMASTIA

Camilla Neethling

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HIDRANITIS SUPPURATIVA

Jannet Harmse

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HOLOPROSENCEPHALY

 

Veronica Nel

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IDIOPATHIC THROMBOCYTOPENIA PURPURA

Danelle de Beer

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MOEBIUS SYNDROME

Miracle May

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MULTIPLE SCLEROSIS

Helga Weiland

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MYASTHENIA GRAVIS

Candice Mes

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NEUROFIBROMATOSIS
 

Helen Marais

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PAEDIATRIC CARDIOMYOPATHY

Mari de Jongh

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POMPE

Jean-Marie van Zyl

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PULMONARY HYPERTENSION

Razelle Shulman

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SARCOIDOSIS

Mmakwakhe Mtsweni (Tiny)

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SCN8A EPILEPSY

Donna Forman

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SPINAL MUSCULAR ATROPHY

Kerry Walsh

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TETRALOGY OF FALLOT

Safia Mansoor

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TUBEROUS SCLEROSIS

Lelanie van der Merwe

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WILSONS DISEASE

Candice Schutte

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BLEPHAROPHIMOSIS PTOSIS EPICANTHUS INVERSUS SYNDROME

Zanele Dlamini

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COMMON VARIABLE IMMUNE DEFICIENCY

Benita Blundell

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CYSTIC FIBROSIS

Belinda Nell

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DRAVET SYNDROME

Jill Kronenberg

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DYSAUTONOMIA

Helen van Niekerk

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EHLERS DANLOS SYNDROME

Enid Strydom

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EPILEPSY

Kate Couchman

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FIBROMYALGIA & SPONDYLOSIS

Asherine Gurahoo

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HAEMOPHILIA

Nerissa Roberts

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HUNTINGTONS DISEASE

Anne-Marie Ungerer

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IDIOPATHIC INTRACRANIAL HYPERTENSION & EMPTY SELLA SYNDROME

Maryke Thomson

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INTERSTITIAL LUNG
DISEASE
 

Leilanie Crofton-Ball

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MOEBIUS SYNDROME

Willem De Villiers

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MULTIPLE SCLEROSIS

Non Smit

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MYASTHENIA GRAVIS

Megan Hunter

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NEUROFIBROMATOSIS

Shannon Levings

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PECTUS EXCAVATUM

Johan Van der Schyff

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PRADER-WILLI SYNDROME

Karin Clarke

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PULMONARY HYPERTENSION

Shanna Hiemstra

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SARCOIDOSIS

Zaida Da Silva Bastra

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SICKLE CELL ANAEMIA

Nabeelah Peerbhai

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SPINAL MUSCULAR ATROPHY

Tasnim Jadwat

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TRIMETHYLAMINURIA (FISH ODOUR SYNDROME)

Mapule Tsakani Pretty

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TURNER SYNDROME

Mari Kruger

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BRITTLE BONES

Rageema Livingstone

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COMMON VARIABLE IMMUNE DEFICIENCY

Cindy van den Berg

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CYSTIC FIBROSIS

Rida Viljoen

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DUCHENNE MUSCULAR DYSTROPHY

Joanne van der Westhuizen

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DYSAUTONOMIA

Khadeeja Munchi

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EHLERS DANLOS SYNDROME

Mpho Matseka

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FIBRODYSPLASIA OSSIFICANS PROGRESSIVA

Ciske Faber

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GASTROSCHISIS / CHOROID PLEXUS PAPILLOMA / HYDROCEPHALUS

Jade More Sim

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HEREDITARY ANGIODEMA

Janice Strydom

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HUNTINGTONS DISEASE

Marelise Visser

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IDIOPATHIC INTRACRANIAL HYPERTENSION

Chante Swart