SUPPORT GROUP MEMBERS

Child And Youth Care Zimbabwe

Our organisation helps children who grew up in an orphanages.When they are 18+ years they are discharged.Sadly these young people have no family to speak of. It is our goal to provide their needs both physically,socially and spiritually at this point of need.We provide the children psychosocial support and life skills training that will sustain them in years to come.We also provide their physical needs as they start a new home. We need blankets,clothes,household utensils and furniture.All this

is distributed to each child as they move out.

Our purpose is that when they leave the home they are model citizens that are socially well adjusted and that would give back to society and make a positive impact in any environment they find themselves in. 

Email

Phone

+263 77 540 7510

CMTC-OVM

CMTC-OVM is a worldwide non-profit patient organization that aims to improve the quality of life of people suffering from vascular abnormalities (blood vessel abnormalities), such as CMTC (‘Van Lohuizen syndrome’), and stimulate scientific research into these disorders.

Email

Phone

31334946671

Down Syndrome South Africa (DSSA)

Down Syndrome South Africa (DSSA)is a non-profit organisation (NPO 009-415) and was formed in 1986 as the national umbrella body and parent advocacy organisation and lobby group for the constitutional rights of persons with Down syndrome and other intellectual disabilities. DSSA currently has 12 regional associations and support groups throughout the country that provides services to persons with Down syndrome, developmental delays and their families.

Email

Phone

0861 369 672

Epilepsy SA

Epilepsy South Africa is the only national NPO focusing on persons with and affected by epilepsy. However, we also offer services to persons with other disabilities. These services include social development, residential care, economic development and skills development. All our work is based on advocacy and the rights of persons with disabilities as described in the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD) and Resolution 68.20 of the World Health Organisation on epilepsy.

Email

Phone

0860 EPILEPSY (374537)

SA Haemophilia Foundation

We have a commitment to promote the welfare of all persons with haemophilia and similar conditions in South Africa and elsewhere. We hope our website and social media pages will help provide a better understanding of this inherited, lifelong bleeding disorder.

Email

Phone

082 553 5891

Heart Kids SA

1 in 100 babies are born with CHD, In certain cases the defects are not detected early enough, or not detected at all.
We strive to walk the journey with families and to provide support so that no one feels alone.  We are a Non Profit Organization founded in 2014 by friends and families of babies that have been born with Congenital Heart Defects (CHD).

Email

Phone

071 149 3570

Hereditary Angioedema Foundation South Africa

We are an advocacy group for patients with hereditary angio edema as well as their caregivers, physicians and researchers.
HAE South Africa aims to help patients gain access to more treatment options, empowering patients through education about their condition, educating the medical and general community on HAE to ensure patients are recognised and diagnosed more quickly, and to connect patients and carers with our support network as we believe they need to know that they are not alone.

Email

Phone

083 541 0476

Lupus Foundation of SA

The aim foundation is to share and invite as many sufferers and supporters to create awareness about SLE (Lupus) support, research and eventually cure it.

Email

Phone

082 564 7803

Movement Disorder Support

Movement Disorder Support (MDS) is a non-profit, membership organisation connecting all affected, to resources and services relevant to the care of / and management of Movement Disorders.

Email

Phone

060 519 8153

Mighty Matthew May - Mucopolysaccharidosis (MPS)

We expect Matthew to have normal intellect, but his skeletal situation remains primary concern. Matthew has almost entirely stopped growing; he has a lower spine and a neck deformity which will have to be operated on at some point in order to stabilize.

Symptoms can vary so much from one patient to another that we cannot entirely predict what’s next. In the meantime we shall tick all the boxes: Aside from his regular paediatrician, we have two orthopaedic surgeons (one for his spine and one dealing with hips, legs etc, a genetic specialist, a dentist, and an audiologist on board. Ophthalmologic and cardiac checks have been booked going forward.

In the meantime... Matthew has hardly a care in the world. He loves life! He feels the same as all his other little mates at school, just falls down a little more. He has such a happy outlook, and takes everything in his stride.

Email

Phone

083 350 6378

Multiple Sclerosis SA

MULTIPLE SCLEROSIS SOCIETY is a patient driven organisation supporting and facilitating services to all persons with MS, their families and carers.

MSSA speaks out, lobbies and advocates on behalf of the patient, with access to treatment and support being the biggest challenge.

The ultimate goal is to make information available to everybody living with this incurable and debilitating disease, and their loved ones, too.

Email

Phone

082 550 5486

Muscular Dystrophy Foundation of South Africa

The Muscular Dystrophy Foundation of South Africa assists affected persons and their families by: 

  • Providing access to international information regarding specific dystrophies.

  • Hosting informative workshops about muscular dystrophy.

  • Providing referrals to health facilities and professional counsellors.

  • Assisting with specialised disability equipment, if funding is available.

  • Providing access to social service professionals for emotional support.

  • Facilitating support groups.

  • Create public awareness on muscular dystrophy issues and disability.

Email

Phone

011 472 9703  

Nevus Association South Africa

Nevus Association South Africa is a newly-formed organization that brings together families affected by Congenital Melanocytic Nevi (CMN). Its aim is to raise awareness of this rare skin condition within the general public as well as within the medical profession. It connects patients with the relevant doctors in South Africa and abroad. The organization is affiliated with other CMN patient advocacy groups and doctors internationally. Our mission is to provide support for people affected by CMN, and to contribute as much as possible towards improved treatment and, ultimately, finding a cure.

Email

Phone

076 283 4220

Nystagmus Support South Africa

Nystagmus is an eye condition which affects 1/1000. In a country with 51.19 million (2012 figures), this would mean that it affects 511,900 daily. This is a network where those affected by, or parents of children with Nystagmus can network, make friends, share or gain information on this condition.

Email

Phone

083 582 7152

Pulmonary Hypertension Association SA 

Our focus is creating a supportive community for Pulmonary Hypertension patients, their caregivers and their families and to create awareness of the condition and advocate for treatment.

We want to provide hope for the pulmonary hypertension community through support, education, advocacy and awareness

Email

Phone

082 945 7455

CureSMA South Africa

Cure SMA provides support to patients and families affected by spinal muscular atrophy and funds and directs research leading the way to a cure for SMA.

Email

Phone

072 153 5953

Smile Foundation

The Smile Foundation is a South African NPO that assists children with any type of facial abnormality, to receive corrective Plastic and Reconstructive surgery within South Africa. We help children who suffer from treatable facial deformities such as Cleft Lip and Palate, burn victims, Moebius syndrome (facial paralysis) and other conditions.

Email

Phone

011 325 6480

South African Thalassaemia Association

The South African Thalassaemia Association (SATA) endeavours to improve the quality of life of people living with the hereditary blood disorder, thalassaemia.By offering support and guidance to patients, their parents and families, SATA aims to help people understand and manage the disease and its effects on patients’ lives – both medically and socially.

Email

Phone

0836447867

UNIQUE

Unique is a registered charity (registration no. 1110661).  Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder and to raise public awareness.  Wherever you are in the world, you are not alone in this journey!

Email

Phone

+44(0)1883 723356

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