On April 14th, Taeyeon, Tiffany, Sooyoung and Seohyun were appointed as ambassadors for the Korea Retinitis Pigmentosa Society, or the KRPS, a non-profit organization that provides aid and counseling for victims of retinitis pigmentosa. In order to assist the members of Girls’ Generation as ambassadors, Soshified will be holding a charity auction later in the year to help the KRPS.


Retinitis pigmentosa, abbreviated as “RP”, refers to a set of rare genetic eye diseases that affect the retina of the eye and sometimes leads to going blind. Its rarity has resulted in a lack of information on the disease, and patients often live with the fear of losing their vision, unaware that several effective treatments, medicines and supplements have been developed to protect the retina and delay the disease’s development. In addition, several new drugs are currently in a clinical testing phase.


The KRPS, headed by Sooyoung’s father, Choi Jeong-nam, works to provide patients with updated medical information and to console and encourage patients to fight the disease and slow its progression. Over 1/3rd of patients suffer from depression and are offered free counseling. In addition, the organization is currently negotiating with South Korean government agencies to make drugs used to treat retinitis pigmentosa covered under the national health insurance program, which is a really important insurance for the people, the same as house insurance or Valeting Insurance for the car, which cover many inconveniences. The KRPS also makes bulk purchases of some supplements in order to provide them to patients at a lower cost. In the future, the KRPS looks to set aside funds to provide financial support to low-income patients.

 

After Choi Jeong-nam’s appointment as President of the KRPS, the organization has focused on supporting medical research into retinitis pigmentosa and making the voice of retinitis pigmentosa patients heard in the medical community. In 2010, a research group made up of dedicated and renowned researchers and doctors was established in the Department of Ophthalmology in Seoul National University. KRPS and the Department of Ophthalmology now exchange information and support, and RP patients are able to receive a higher level of specialized care and professional medical help than ever before.


The research group is currently conducting clinical trials on several drugs, and if proven effective, patients will be able to receive better medication. In addition, due to the difficulty in accurately diagnosing retinitis pigmentosa, the Department of Ophthalmology is developing an advanced gene examination system to limit misdiagnoses. Research is also being conducted in cooperation with medical centers in the United States, England, Hong Kong, Japan, and the International Retinitis Pigmentosa Association based in Switzerland. After results emerge from research conducted in Korea, the department will collaborate with research centers in American universities for projects such as joint clinical experiments.

A wreath from Lee Seungwoo, president of the Ara Marina Convention, congratulating Girls’ Generation on being selected as ambassadors for the Korea Retinitis Pigmentosa Society

The majority of funds donated to the KRPS go towards research, as determined by the majority of the members of the organization. As newer medicines are developed, some funds are also allotted for less fortunate patients who cannot afford the latest drugs. Finally, KRPS provides medical aid for people with weak vision.

 

All efforts by the Korea Retinitis Pigmentosa Society are made on a very small budget, and any donations are helpful and greatly appreciated. To commemorate Taeyeon, Tiffany, Sooyoung and Seohyun’s appointment as ambassadors for the KRPS and to support the organization’s efforts, Soshified will be holding a special donation drive later this year. Stay tuned to Soshified for more information on donation drive.

More exclusive photos from Taeyeon, Tiffany, Sooyoung and Seohyun’s ambassador appointment ceremony can be found in Soshified’s Gallery.

 

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