{"id":7793,"date":"2022-04-21T10:06:00","date_gmt":"2022-04-21T10:06:00","guid":{"rendered":"https:\/\/wp26.cmswebdeveloper.com\/asian-news\/living-with-inherited-sight-loss-make-your-voice-heard\/"},"modified":"2022-04-21T10:06:00","modified_gmt":"2022-04-21T10:06:00","slug":"living-with-inherited-sight-loss-make-your-voice-heard","status":"publish","type":"post","link":"https:\/\/wp26.cmswebdeveloper.com\/asian-news\/living-with-inherited-sight-loss-make-your-voice-heard\/","title":{"rendered":"Living with inherited sight loss? Make your voice heard!"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">Retina UK, is a charity supporting people affected by inherited sight loss, has launched its second audience insight survey and would like to encourage as many people as possible to take part.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Anyone who lives with inherited sight loss (e.g. retinitis pigmentosa, Stargardt disease, Usher syndrome etc.) or is the parent\/carer of someone with a condition can get involved.&nbsp;<\/p>\n\n\n\n<p class=\"has-white-color has-black-background-color has-text-color has-background wp-block-paragraph\">The questionnaire can be completed:<br>\u2022 on paper (request a copy by phoning 01280 821334)<br>\u2022 online: <a href=\"https:\/\/www.surveymonkey.co.uk\/r\/SightLossSurvey2022\" target=\"_blank\" rel=\"noreferrer noopener\">https:\/\/www.surveymonkey.co.uk\/r\/SightLossSurvey2022<\/a><br>\u2022 over the phone (call 01280 821334)<\/p>\n\n\n\n<p class=\"has-text-align-center wp-block-paragraph\"><strong>This survey follows the first Retina UK sight loss survey which took place in 2019. More than 900 people took part and their feedback has directly led to the following initiatives from the charity:<\/strong><br>\u2022 The inherited sight loss community wanted to hear more from Retina UK on treatment updates, research progress and managing life with sight loss so they started new monthly webinars and podcasts on a variety of topics.<br>\u2022 They said that they benefit from informal meetings with others affected by sight loss, so they moved their local peer support group meetings online during the pandemic and are setting up new ones.<br>\u2022 They were not aware of genetic testing or that it was not available to them, so they launched their innovative Unlock Genetics website, packed with information to enable people living with inherited sight loss to make informed choices.<br>\u2022 The community told them about the emotional or psychological impacts of their condition, so they created accessible wellbeing modules for their helpline volunteers, and now they\u2019re developing these for their community.<br>\u2022 They told them how inherited sight loss impacts on their daily lives. They shared these experiences with decision-makers who agreed to the first treatment for inherited sight loss being available on the NHS.<\/p>\n\n\n\n<p class=\"has-white-color has-black-background-color has-text-color has-background wp-block-paragraph\">The survey will close on Wednesday 27 April and can be completed anonymously. Visit <a href=\"https:\/\/retinauk.org.uk\/general-news\/survey\/\" target=\"_blank\" rel=\"noreferrer noopener\">www.RetinaUK.org.uk\/survey<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Retina UK, is a charity supporting people affected by inherited sight loss, has launched its second audience insight survey and would like to encourage as many people as possible to take part. Anyone who lives with inherited sight loss (e.g. retinitis pigmentosa, Stargardt disease, Usher syndrome etc.) or is the parent\/carer of someone with a [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":753,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[74],"tags":[524,525,526,527],"class_list":["post-7793","post","type-post","status-publish","format-standard","has-post-thumbnail","category-news","tag-bhavini-makwana","tag-retina-uk","tag-sight-loss","tag-survey-to-help-blind-people"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Living with inherited sight loss? 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