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.
Andrea's Gift Foundation - Lupus Support
The focus of the group is patient care, which includes support groups, hospital visits, information sharing and creating a community. Groups are regionally based with separate groups that focus on Tweens and Teens and Men because this demographic often has different requirements. Using surveys to collect and analyse data
Phone
+27 76 690 7763
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.
Phone
064 901 2084
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.
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.
Phone
+31 315 755 994
South African Cystic Fibrosis Association
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.
Phone
083 285 5853
Debra
To support the EB community, relieve physical and mental distress among persons suffering from EB by the provision of practical advice, guidance and support. Affiliate and/or associate with such other bodies as can assist with the objectives of the Association by promoting and fostering cooperation and information exchange among those who suffer from EB with organisations and medical professionals who support them.
email address unavailable
Phone
phone number unavailable
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.
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.
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.
Phone
082 553 5891
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.
Phone
083 541 0476
IIH & ESS South Africa
Our main focus is to support our patients; motivate them; and help remind them that the best way to overcome, is by positive thinking. Even if there is no cure, we can still fight together!
We are a support group for sharing personal experience and assistance with referrals to Doctors that know the disease.
Phone
082 317 3101
International Children’s Palliative Care Network (ICPCN)
The International Children’s Palliative Care Network (ICPCN) is a worldwide network of individuals and agencies working with children and young people with life-limiting and life-threatening conditions. We actively work to improve the lives of the estimated 21 million children with life-limiting conditions worldwide through communication, advocacy, research, education and strategic development of services.
Phone
072 991 1277
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.
Phone
083 443 8111
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.
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.
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.
Phone
083 350 6378
Multiple Sclerosis SA
MULTIPLE SCLEROSIS SOCIETY is a patient driven organisation supporting the patient-journey. Speaks out, lobbies and advocates with access to treatment and support being the biggest challenges. The term "patient empowerment" is among the top buzzwords in health care, emphasizing the value of having greater control over their health care.
WHO defines empowerment as "a process through which people gain greater control over decisions and actions affecting their health" (WHO 1998). Information is fundamental to the process of patient empowerment.
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.
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.
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.
Phone
083 582 7152
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.
Phone
083 634 9825
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
Phone
082 945 7455
Sickle Cell South Africa
Our focus is to provide a support system for patients and caregivers affected with Sickle Cell Anemia and Thalassemia. We want to help create awareness around the disease, as well as contribute towards projects that affect and assist patients.
Phone
084 705 0392
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.
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.
Phone
011 325 6480
Transplant Education for Living Legacies (TELL)
TELL’s goal is firstly to help educate both potential donors as well as medical healthcare professionals and break the stigmas and misinformation around organ and tissue donation. Secondly, we want to encourage anyone who wants to donate their organs to TELL their loved ones and community of their wishes to be an organ and tissue donor. Awareness is key, and we firmly believe that the most important part of improving organ and tissue donation is conversation.
Phone
082 785 2530
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.
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!
Phone
+44(0)1883 723356