Retina South Africa, located at Helvetia House on the border of Bedfordview and Edenvale, is a patient action group for people with genetic retinal degenerative conditions such as Usher syndrome.
Mr James Cape, the national chairperson, said that the national office moved to Helvetia House five years ago while the Gauteng branch has been there for 20 years.
The non-profit organisation and public benefit organisation was first established in 1980 as the South African Retinitis Pigmentosa Society and according to the Mr Cape the South African organisation founded what is today known as Retina International.
According to Mr Cape the goal is to treat and cure retinal blindness. He said that the “main objective of the organisation is to go out of business”.
He explained his statement by saying that once a cure has been found, there would be no need for the organisation as patients would be able to be cured.
He said that the organisation aims to cure and treat retinal blindness.
The organisation also offers guidance and counselling. “When people first learn they have this disability, they are shocked,” he said.
Information available on the Retina South Africa website highlight the main focus of the organisation, which are to:
- Support of the Retinal Degeneration Research project at the University of Cape Town to find the genetic mutations in South African families.
- Create public awareness of retinal degeneration.
- Facilitate genetic testing to identify patients who will benefit from clinical trials.
- Offer support, which includes education, referral and intervention to patients.
- Collaborate with organisations both locally and internationally.
- Fundraising.
- “The organisation keeps everything above the board,” said Mr Cape.
Transparency and the adherence to ethical values is important to the organisation.
Retina South Africa has a scientific medical board to ensure that any research and possible cures are viable and can be considered for clinical trials.
“The biggest challenge would be finding the people who need help and helping find the funds,” said Mrs Claudette Medefindt, the deputy chairperson of Retina International and head of science for Retina South Africa.
“Educating people is important” said Mr Cape.
He said that people should know that their world won’t end if they are diagnosed, as there are programmes, computer software and smartphone apps that can help.
Members from Retina South Africa Organisation will be attending an international conference, where global research will be compared, both revised and new papers. Forty-three international members and approximately 24 sub-members, who have not met the requirements will be attending the international collaboration.
The patient-driven group has branches in the major centres in South Africa. Membership is open to all patients, family members and persons who wish to support Retina South Africa’s quest to find treatments for retinal blinding conditions.
