Who is Rare Diseases South Africa?
Rare Diseases South Africa, a registered NPO, is a voice for vulnerable communities – one that not only provides support for those impacted by rare diseases, but also, advocates for universal healthcare to ensure equitable access for all Rare Disease patients. Founded in 2013, Rare Diseases South Africa brings international best practice and local innovation together in terms of medical intervention and treatment, drives a collective voice for medical advancement and support and advocates the right to medical advice and assistance. Rare Diseases South Africa plays a fundamental role in bridging the gap between vulnerable communities and medical advancement.
What is a rare disease?
A condition is considered rare when it affects 1 person in 2000 according to Eurordis. Currently, South Africa does not have its own definition of a rare disease which is one of the major issues needing to be addressed by government.
How many rare diseases are there?
There may be as many as 7,000 rare diseases, so whilst they are individually rare, they are collectively common.
What are some examples of rare diseases?
Rare diseases are present across the medical spectrum. Some are widely recognised by name, such as cystic fibrosis, while others are less known, such as cat eye syndrome. There are rare neurological and neuromuscular diseases, metabolic diseases, chromosomal disorders, skin diseases, bone and skeletal disorders, and rare diseases affecting the heart, blood, lungs, kidneys, as well as other body organs and systems.
What causes rare diseases?
There are many different causes of rare diseases. The majority are thought to be genetic – directly caused by changes in genes or chromosomes. In some cases, genetic changes that cause disease are passed from one generation to the next. In other cases, they occur randomly in a person who is the first in a family to be diagnosed. Many rare diseases, including infections, some rare cancers, and some autoimmune diseases, are not inherited. While researchers are learning more each year, the exact cause of many rare diseases is still unknown.
What is being done to develop treatments for rare diseases?
Researchers have made progress in learning how to diagnose, treat and even prevent a variety of rare diseases. However, there is still much to do because most rare diseases have no known treatments.
What are some of the problems people with rare diseases experience?
I am an HCP treating a patient I think has a rare disease – how can RDSA help me?
How does RDSA support HCPs treating rare diseases?
Patients / Caregivers
I/A loved one has been diagnosed with a rare condition – what do I do?
I think I/a loved one may have a rare condition – where do I go?
How can I find a doctor knowledgeable about my/my loved one’s rare disease?
How can I find other people with the same condition as me/my loved one?
Do I/Does my loved one have to be on medical aid to receive support from RDSA?
No. We provide support to ALL patients impacted by Rare Diseases regardless of their medical aid or where they access services.
What happens when I sign up as a member of RDSA?
Rare ACTIVists / Volunteers
How can I get involved with RDSA?
Our RARE ACTIVist programme is aimed at all those wanting to assist us in raising funds and awareness for our cause, our patients and ultimately the rare disease community. Be it volunteering at an event, hosting a family day, or partaking in one of our many sporting teams and using your mobility for the advantage of others, there is always a way for you to get involved.
What is a Rare ACTIVist?
A Rare ACTIVIst is an individual who wants to use their mobility to benefit those without it. Events that Rare ACTIVIsts partake in include running, swimming and cycling, as well as fundraising and volunteering.
How do I become a Rare ACTIVist?
Can I fundraise for RDSA?
What are donations used for?
Provision of services for rare disease patients
Implementation of referral pathways for patients
Maintenance of patient support groups
Assistance with patient advocacy and case management
Legislation and Policy Review
Development of patient educational resources
Monitoring of service delivery
How does RDSA support patients?
They create pathways for patients to successfully navigate reimbursement processes and access to treatment
Provide a platform to meet fellow patients and provide support if needed when dealing with medical professionals
Creates awareness of various diseases which hopefully will help the community at large to be more understanding.
Lobby and advocate with policy makers to ensure equitable access to health for those impacted by a rare disease
How does RDSA support families of patients?
Connect families impacted by similar conditions
Hosting of family days and patient mornings
Providing access to support mechanisms
Dedicated caregiver events and discussions
How will Rare Diseases SA support my fundraiser?
Unfortunately, due to a capacity and ethics perspective, Rare Diseases SA is unable to assist with or promote individual or personal fundraising initiatives. In this instance we recommend you register for a Back-a-Buddy account HERE and create your personal fundraising campaign.
*Note: RDSA cannot guarantee a listing on the ForGood platform, however we can assist with initiating this process.
For registered support groups – you will receive a free listing on our online events calendar as well as inclusion on our Facebook events page. For non-registered support groups, there will be a R100 fee levied to list your event on the above mentioned platforms. To enquire, please email firstname.lastname@example.org