Maranda van Dam

ANKYLOSING SPONDYLITIS

I currently support a group of 650 patients that have Ankylosing Spondylitis.

Kim Kinsella

CHROMOSOME DISORDERS

I see myself as the conduit for Rare Diseases SA, they are able to refer diagnosed patients and be that “light at the end of their dark tunnel” .

Cindy van den Berg

COMMON VARIABLE IMMUNE DEFICIENCY

Being a patient myself, I would like to create awareness for CVID. When I was diagnosed, I didn't always understand what to ask, do or what this condition entails.

Melanie Victor

DEPRESSION

You cannot allow depression to become your identity. A lot of people don't have the tools to cope with their emotions and feelings. I hope to touch hearts of people that suffers with depression due to a disease or illness. To let people know that they are not alone in their emotions and feelings.

Joanne van der Westhuizen

DUCHENNE MUSCULAR DYSTROPHY

My son was diagnosed with Duchenne Muscular Dystrophy. I want to contribute to find a cure for this fatal disease that affects 1 out of every 3500 boys across the world.

Ashleigh Paterson

EHLERS DANLOS SYNDROME

I’m passionate about building a better platform for patient advocacy, and for improving education across all medical fields, improving the life of those suffering with chronic illness.

Dané Rossouw

EPIDERMOLYSIS BULLOSA

It’s my passion to thrive with a rare disease regardless of how tough it can be.  I am an extrovert and always trying to enlighten the spirits in which ever situation I find myself.

Asherine Gurahoo

FIBROMYALGIA & SPONDYLOSIS

I want to change the mindsets of patients and people who are not aware of these medical challenges so that they can be kind to patients instead of treating them as though they are insane attention seeking people.

Nerissa Roberts

HAEMOPHILIA

My son Ezra was diagnosed with a Haemophilia, a genetic bleeding disorder, which I had never heard of before. Getting in touch with other moms and Haemophilia patients opened a world of hope to me.

Anne-Marie Ungerer

HUNTINGTONS DISEASE

I have a son with Huntingtons Disease and run a support group for HD affected families. This programme is important to me as it is one more way of letting HD families know that they are not alone and that there is support available to them.

Maryke Thomson

IDIOPATHIC INTRACRANIAL HYPERTENSION & EMPTY SELLA SYNDROME

I wish to make a difference by sharing my experiences regarding signs and symptoms to look out for, side effects of treatment, help in the process of collecting evidence and gain more information about this disease.

Leilanie Crofton-Ball

INTERSTITIAL LUNG DISEASE

I would like be available to others with lung diseases, to encourage, listen to and share research and convey information from RDSA.

Sibongile Komati

LUPUS

I am the Founder and Patron of the Lupus Foundation of South Africa doing advocacy work for lupus, a condition many people know very little about yet has much devastating consequences.

Helga Weiland

MULTIPLE SCLEROSIS

I have walked the path of being diagnosed with MS and seeing how it affects the many aspects of a patient's life. The support of family, friends and employers becomes invaluable at this time. It is difficult to provide support to a person with a rare disease because of it being exactly that - RARE!

Candice Mes

MYASTHENIA GRAVIS

When I was diagnosed with Myasthenia Gravis in 2007 I felt so scared alone. It took few years until I finally met another MG warrior. My wish is that those diagnosed with a rare disease can find help and comfort from day 1 of their diagnosis.

Erna Loretz

NEUROFIBROMATOSIS

I am an NF warrior and am involved with people that are living with Neurofibromatosis. It really is a passion of mine to give support to adults and children in South Africa that are being affected by NF.

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Tamara Zawe

OSTEOGENESIS IMPERFECTA

Being a mom with a child with a rare disease I have made baby steps from primary to high school to stand for integration and inclusion. Being part of the programme would be great as it gives me a platform to share, support and give advice.

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Jean-Marie van Zyl

POMPE

Ek is 7 jaar al deel van Rare Disease SA. Dit is vir my belangrik dat ander bewus word van rare siektes maar dat jy steeds voluit kan leef met die regte behandeling. Hierdie is vir my belangrik want so kan ons as n groep wat dieselfde siekte het met mekaar gesels en jy weet jys nie alleen nie.

Ayanda Nkosi

PRIMARY SCLEROSING CHOLANGITIS

I want to teach South Africans about how important it is to take care of your liver. I also want to have a support group for people with PSC and people who are infected and affected with this disease. I also want to help people to get access to free medication especially those that cannot work as a result of PSC.

Anna Sanfilippo

RAMSAY HUNT SYNDROME

I want to raise awareness for the disease and offer support where needed.

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Zaida Da Silva Bastra

SARCOIDOSIS

Having been diagnosed 30yrs ago with Pulmonary Sarcoidosis and feeling alone, I was motivated to help others like me understand what is happening.

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Donna Forman

SCN8A EPILEPSY

It is important to me to be part of raising awareness and the profile of this condition to try and assist other families whose children have refractory epilepsy with a possible SCN8A diagnosis.

Bianca Dessington

SJOGRENS & LUPUS

When I started my rare journey I was alone. It was an emotionally draining situation. This is why I am doing it, this is why I put myself out there. No one should ever to have fight alone or go through any of this alone.

James Campbell

SPINOCEREBELLAR ATAXIA

I want to help to raise awareness and understanding of my disease.

Mapule Tsakani Pretty

TRIMETHYLAMINURIA (FISH ODOUR SYNDROME)

I have been living with TMAU for 3 years and my wish is to help people not go through what I went through before I could find out my diagnosis.

Mari Kruger

TURNER SYNDROME

My daughter Lara was diagnosed with Turner Syndrome in utero at 20 weeks. I want to help inform more parents about this rare disease! I want to become Lara's voice and tell her story so that more people can become aware of this and be equipped with the necessary knowledge of what to expect.

Candice Schutte

WILSONS DISEASE

I have spent the last 10 years not knowing I had a Rare Disease and understanding why I was so ill. I have to believe that the lesson learnt in this is to help others not experience the same!

Tania Cloete

ARNOLD CHIARI SYNDROME

I was diagnosed with Arnold Chiari in 2007, after I spent 7 years with the symptoms. I am a real people’s person, and love being able to help and support people.

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Ophelia Maila

CHROMOSOME DISORDERS

I want to address the social stigma or genetic discrimination that still surrounds patients with rare genetic conditions.

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Kristi Kirstein

CUSHING'S SYNDROME

I was diagnosed with Cushing’s Syndrome in 2011 at the age of 15. It took me about 3 years to finally get a diagnosis. I want to raise awareness about Cushing’s Syndrome, to help patients get diagnosed and to get them the treatment that they deserve.

Janette Swart

DERMAMYOSITIS

This programme is important to me, because now I know I am not alone. I used to hide before I got in contact with this platform, now I shine!

Aaliya Essack

DYSAUTONOMIA

After going through most of my life without answers and having to constantly knock down barriers in order to get people to listen or help, I have always wanted to be involved in helping to change the system and make it easier so other people don’t have to struggle for answers just because they don’t fit into an easy box.

Enid Strydom

EHLERS DANLOS SYNDROME

I am 42 years old and have only recently been diagnosed with Classic-Like-EDS. Every day is a new day, and every day is definitely not the same, but if you do your planning, you can still have a full life.

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Ciske Faber

FIBRODYSPLASIA OSSIFICANS PROGRESSIVA

Awareness is key to attempt and reach out to those with fop and offer support to them. This can become a lonely battle yet we aren't alone.

Jade More Sim

GASTROSCHISIS / CHOROID PLEXUS PAPILLOMA / HYDROCEPHALUS

I want to be available to parents who are scared and need to speak to someone who has gone through what they are going through. I want to be able to share our very traumatic, but hopeful and ultimately positive story with parents facing similar situations. 

Janice Strydom

HEREDITARY ANGIODEMA

While I realize I will probably never have access to adequate and affordable medications in my lifetime, my aim is to raise awareness so that others who may be suffering can be diagnosed and assisted to manage their symptoms the best way possible.

Marelise Visser

HUNTINGTONS DISEASE

I would like to create greater awareness regarding HD and improving patient and caregiver support in general and where possible.

Chante Swart

IDIOPATHIC INTRACRANIAL HYPERTENSION

It's not easy having a rare disease very few people understand that you are sick even when you don't look sick. I am a loving person and just want to help other warriors to see the good in themselves and to never give up but to support each other. We hope for a cure.

Bernice Czujko

KAWASAKI DISEASE

I am a regular working Mom with a Rare Disease child and it didn't come with an instruction manual! I believe that every person with a Rare Disease is different, and they have to be in order to be a warrior.

Miracle May

MOEBIUS SYNDROME

I am 22 years old living with Moebius Syndrome which is a rare neurological disease that results in facial paralysis. I am creating awareness of the syndrome in my community and I want to continue doing so.

Non Smit

MULTIPLE SCLEROSIS

I have been working with people with multiple sclerosis for more than 30 years. I have headed up the MS Society for the past 17 years focussing to provide emotional support to people with MS, their caregivers, families and loved ones.

Megan Hunter

MYASTHENIA GRAVIS

Rare Diseases as a whole has been my tribe, my support and my friends; and I want to be able to help others through being an ambassador for MG.  I want these brave warriors to know that they are never alone.

Helen Marais

NEUROFIBROMATOSIS

I am the founder of NFSA and committed to making a differerence has my son has NF and so many others need a voice and help.

Nicole Vergos

OSTEOGENESIS IMPERFECTA

I remember growing up there was little information out there on OI and no known communities. I want to provide support, an ear to listen to, a shoulder to cry on and a friend to laugh with among others living with OI.

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Karin Clarke

PRADER-WILLI SYNDROME

Through my involvement with the PWS support group I have learnt there are bigger challenges to deal with like awareness and advocacy. Together we can make a difference and alone we are weak.

Razelle Shulman

PULMONARY HYPERTENSION

I am hoping to get all patients who have in South Africa to get together and help one another to create much needed awareness of the disease within their own communities.

Dionne Snyders

RETT SYNDROME

My daughter, Hannah, has Rett Syndrome and I manage Rett SA. The program is important to me as I’d like to be an ambassador for my little girl and all the other Rett girls in SA.

Sharon Lapao

SCHIMMELPENNING SYNDROME

After walking an unknown road and facing my son Jared's diagnosis that baffled doctors for 16 years, watching how he has fought to be accepted and understood. We never want anyone to have to feel alone in their struggle, and hope to be a voice and a comfort to others walking the road less traveled.

Pamela Verrall

SHORT BOWL SYNDROME

My reasons for wishing to assist others is mainly due to the fact that I live in a rural area, McGregor in the Western Cape Boland area and have been left mostly to my own devices in finding out about short bowel syndrome.

Kerry Walsh

SPINAL MUSCULAR ATROPHY

I’m so passionate about sharing my story and creating awareness around people with disabilities. RDSA is extremely close to my heart and I would love to help give back after all the generosity I’ve received over the years.

Safia Mansoor

TETRALOGY OF FALLOT

My aim is to raise awareness and bridge the gap between healthy and health-challenged individuals in order to create an environment that is conducive to nurturing tolerance, kindness and unity.

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Helen Malherbe

TRISOMY 18 (EDWARD'S SYNDROME)

I want to be a voice for those who cannot speak for themselves.

Alison Tilling

UREA CYCLE DISORDER

I have a 5-year-old son, Jack that has a rare disease called Urea Cycle disorder (Cps1). I feel that it is my responsibility to help and spread the word about rare diseases such as my son's, and to help wherever I can to raise awareness about all other rare conditions.

Rageema Livingstone

BRITTLE BONES

I am the founder of Brittle Bones SA and through the NPO we provide people living with OI wheelchairs and other mobility devices.

Benita Blundell

COMMON VARIABLE IMMUNE DEFICIENCY

My daughter has Primary Immune Deficiency (CVID). So many people are uneducated on this and thus there is ignorance and a lack of support for the patients.

Rida Viljoen

CYSTIC FIBROSIS

I have Cystic Fibrosis and I feel that patients need to be represented on all levels. I have decided to join RDSA to take hands and make sure even more people are supported and heard.

Jill Kronenberg

DRAVET SYNDROME

Dravet is caused by a gene mutation, which means that Lily will not outgrow it. There is no cure. This also though means that she is a superhero! (All superheroes except Superman are mutants, right?!). Lily had her first seizure when she was seven months old.

Khadeeja Munchi

DYSAUTONOMIA

I am a passionate advocate with a vision for the betterment of our future, working towards a breakthrough and advancement in terms of easier diagnosis, resources, and treatments, for all affected individuals. 

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Mpho Matseka

EHLERS DANLOS SYNDROME

My mission is create a movement of change-makers for human good. We create sharable human-centric stories that bridge people together, challenge conventional thinking and inspire love. Ultimately I aim to make the lives of people living a chronic illness better.

Flora Senate Rammutle

FIBRODYSPLASIA OSSIFICANS PROGRESSIVA

It is never easy to have a child that suffers from an unknown disease. A strengthened community brings hope to the hopeless. I was once hopeless and today I'm stronger than I was yesterday.

Camilla Neethling

GIGANTOMASTIA

I was diagnosed with Gigantomastia in 2016. I am the Founder and CEO of Gigantomastia SA. Myself and my team want to create awareness of this rare disease, and hoping, with time, when we are by the means, to assist all sufferers in order to get the much needed medical treatments.

Jannet Harmse

HIDRANITIS SUPPURATIVA

I hope to have a positive influence on people struggling with a rare disease or who have a loved one with a rare disease. I've learned to never give up hope even though it might seem like your only option, there is always someone willing to help.

Veronica Nel

HOLOPROSENCEPHALY

I would like to save other HPE parents the difficulties we went through in figuring out how to care for our son's rare special needs as well as be able to put them in contact with other HPE parents who can provide advice and encouragement specific to HPE related issues.

Danelle de Beer

IDIOPATHIC THROMBOCYTOPENIA PURPURA

I was diagnosed with ITP when I was in my second year of university almost 5 years ago. I want to help others like me to understand that it's not the end of the world, but only the beginning of a beautiful story, you only need to find the support you need.

Pontso Khaka Moiloa

LUPUS

This programme is very important to me as I am a parent to over 702 warriors. Creating awareness will assist us in making their lives a little easier and not having to isolate themselves.

Diane May

MUCOPLYSACCHARIDOSIS

My youngest son was diagnosed with MPS at the age of three and we were thrown into this rare world that we had little knowledge about. I wish that no-one embarking on this journey stands alone and want to share my collective knowledge.

Tina Angelos

MULTIPLE SCLEROSIS

Due to my active participation in the MS Society and being an MS warrior myself, I felt strongly that I could contribute in helping others to get the treatment they deserve in South Africa. It takes dedication and determination. I am looking forward to making a difference in the MS community!

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Corno De Jager

MYELOFIBROSIS

I'm a warrior of myelofibrosis hand have personal experience and testimonies of my self hoping to tell my story to inspire others to talk 

Shannon Levings

NEUROFIBROMATOSIS

I want to show people that you are beautiful and can achieve so much in life and that you shouldn't let your diagnoses stop you from getting your goals in life.

Leilani Johnston

POLYCYSTIC KIDNEY DISEASE

I am passionate about rare disease awareness and advocating for equal access to treatment for all patients, while also trying to keep abreast of any new developments in the search for a treatment or cure for ADPKD.

James Smith

PRECOCIOUS PUBERTY

Going through puberty is difficult at the best of times, but experiencing it long before your peers is especially confusing, isolating and emotionally challenging. 

Shanna Hiemstra

PULMONARY HYPERTENSION

At PHASA we want to give patients the hope that they need to know that it is possible to live a long and fulfilling life with PH and that there is a community of people ready to support them and help them to fight for what they need to ensure that.

Mmakwakhe Mtsweni (Tiny)

SARCOIDOSIS

It is imperative for me to advocate and raise awareness on this Rare Disease and others, as often times people die through ignorance and lack of awareness. It is my duty to shine my light to the darkness of other people's lives by raising awareness on non-commutable diseases.

Rashida Rashed

SCLERODERMA

I would love to see patients becoming stronger and living happier.