support

group

members

To reach the RDSA vision of readily accessible care and support for those affected or at risk of rare and congenital disorders, we believe we not only need to unite with support groups but to work together as a team. 

The following support groups have signed up as members and are working towards achieving this goal with us.

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Arthritis Kids South Africa

Up to 75,000 children in South Africa have arthritis, a disease that most people associate with age. Many are undiagnosed; untreated juvenile arthritis can result in physical disabilities, deformities, and, for some, blindness. It goes without saying that these children live in pain.

 

Arthritis Kids South Africa exits to find and support these children and the families that raise them. We educate the public about juvenile arthritis, advocate for patient rights and access to medication, and support patient families. To learn more about us, go to our website.

Email

Phone

064 901 2084

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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

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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

+31 315 755 994

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SA Cystic Fibrosis Association Central

The South Africa Cystic Fibrosis Association (SACFA) is a Non-Profit Organisation, and as such is the primary cystic fibrosis support group and driver of advocacy for the treatment of cystic fibrosis in South Africa. Our objectives include communicating with the CF community, raising public awareness and promoting medical advancements. Fundraising is essential to sustain these objectives.

Email

Phone

083 285 5853

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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

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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)

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Hereditary Angioedema Foundation SA

HAE South Africa is a patient support group aiming to raise awareness in South Africa of Hereditary Angio-edema, a rare and potentially fatal condition.

Email

Phone

083 541 0476

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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

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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

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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

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Jenna Lowe Trust

In 2012 Jenna Lowe, our gorgeous, healthy daughter then aged seventeen, was diagnosed with an extremely rare lung disease called Pulmonary Arterial Hypertension. This little-known, degenerative and life-threatening condition changed not just Jenna’s life, but all of our lives, forever. Bright, beautiful and extraordinarily eloquent, Jenna demonstrated exceptional leadership and courage throughout her three and half year battle with this debilitating illness. She helped raise much needed awareness for Pulmonary Hypertension, opened up new treatment options and brought global expertise to South Africa. Tragically, Jenna passed away in hospital on the 8th of June 2015. In her short life she made a massive social impact, most notably with her internationally acclaimed and award-winning Getmeto21 campaign that significantly increased organ donor registration in South Africa. The Jenna Lowe Trust honours her legacy in all that it does and it supports Pulmonary Hypertension, Organ Transplantation and Rare Diseases in South Africa.

Email

Phone

083 443 8111

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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

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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

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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

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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 and access to treatment available to everybody living with this incurable and debilitating disease, and their loved ones, too.

Email

Phone

082 550 5486

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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  

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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

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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

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Prader-Willi Syndrome Support Group SA

Our goals are:

1) To raise awareness of PWS and increase understanding of the challenges they face, such as always wanting to eat. If people know this about the person with PWS they will know not to feed them and to keep food out of their sight.

2) Offer support and educate parents on how best to care for people with PWS by providing them with guidance in the form of articles, talks, videos and advice. The website and Facebook page are also sources of information that is updated.

3) To improve medical treatment for people with PWS by aiming to get the approval of GHT for PWS in South Africa as it has been approved all over the world. We also aim to increase knowledge of PWS in the medical profession.

4) To provide parents with a chat group where they can communicate and share with other parents who have the same experiences and feel less alone in the world.

5) Support Group training, networking and social initiatives.

6) Maintain affiliation to the International Prader-Willi Syndrome Organisation (IPWSO) and other PWS associations abroad.

Email

Phone

083 634 9825

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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

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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

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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

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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

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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