{"id":8741,"date":"2026-01-22T18:33:37","date_gmt":"2026-01-22T18:33:37","guid":{"rendered":"https:\/\/prrf.org\/?page_id=8741"},"modified":"2026-01-22T18:37:19","modified_gmt":"2026-01-22T18:37:19","slug":"share-your-story","status":"publish","type":"page","link":"https:\/\/prrf.org\/zh\/share-your-story\/","title":{"rendered":"Share Your Story"},"content":{"rendered":"\n\t\t<div id=\"fws_69e4f0219c73e\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone \"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div class=\"nectar-split-heading  font_size_9vw \" data-align=\"default\" data-m-align=\"inherit\" data-text-effect=\"letter-reveal-bottom\" data-animation-type=\"line-reveal-by-space\" data-animation-delay=\"0\" data-animation-offset=\"\" data-m-rm-animation=\"true\" data-stagger=\"true\" data-custom-font-size=\"true\" style=\"font-size: 9vw; line-height: 9.9vw;\"><h1 style=\" color: #0e1035;\">Share Your Story<\/h1><\/div>\n<div class=\"wpb_text_column wpb_content_element \" >\n\t<div class=\"wpb_wrapper\">\n\t\t<p>We would love to hear your rare disease story. Whether you&#8217;re a parent or guardian supporting a child with a rare disease, a young adult navigating college and career, or an adult who has lived with a rare retinal disease for decades, your story matters.<\/p>\n<p>By sharing some of your journey with others, you&#8217;re providing hope. Sometimes we need to hear the challenges and successes of others who&#8217;ve traveled this journey before us to know we&#8217;re not alone.<\/p>\n<p>If you wish to share your story, complete the form below. We&#8217;ll possibly share it on social media channels, our website, eblasts, and marketing materials. If you wish to restrict what we share, please complete a publicity form (linked below) noting your preferences.<\/p>\n<p>Thank you for your willingness to share!<\/p>\n\t<\/div>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_69e4f0219cb97\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone \"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<style id=\"wpforms-css-vars-8738\">\n\t\t\t\t#wpforms-8738 {\n\t\t\t\t--wpforms-field-size-input-height: 43px;\n--wpforms-field-size-input-spacing: 15px;\n--wpforms-field-size-font-size: 16px;\n--wpforms-field-size-line-height: 19px;\n--wpforms-field-size-padding-h: 14px;\n--wpforms-field-size-checkbox-size: 16px;\n--wpforms-field-size-sublabel-spacing: 5px;\n--wpforms-field-size-icon-size: 1;\n--wpforms-label-size-font-size: 16px;\n--wpforms-label-size-line-height: 19px;\n--wpforms-label-size-sublabel-font-size: 14px;\n--wpforms-label-size-sublabel-line-height: 17px;\n--wpforms-button-size-font-size: 17px;\n--wpforms-button-size-height: 41px;\n--wpforms-button-size-padding-h: 15px;\n--wpforms-button-size-margin-top: 10px;\n--wpforms-container-shadow-size-box-shadow: none;\n\t\t\t}\n\t\t\t<\/style><div class=\"wpforms-container wpforms-container-full wpforms-render-modern\" id=\"wpforms-8738\"><form id=\"wpforms-form-8738\" class=\"wpforms-validate wpforms-form wpforms-ajax-form\" data-formid=\"8738\" method=\"post\" enctype=\"multipart\/form-data\" action=\"\/zh\/wp-json\/wp\/v2\/pages\/8741?wpforms_form_id=8738\" data-token=\"0f762cd31f3e4fed23fbfc241b693108\" data-token-time=\"1776611361\"><noscript class=\"wpforms-error-noscript\">\u8bf7\u5728\u6d4f\u89c8\u5668\u4e2d\u542f\u7528JavaScript\u6765\u5b8c\u6210\u6b64\u8868\u5355\u3002<\/noscript><div id=\"wpforms-error-noscript\" style=\"display: none;\">\u8bf7\u5728\u6d4f\u89c8\u5668\u4e2d\u542f\u7528JavaScript\u6765\u5b8c\u6210\u6b64\u8868\u5355\u3002<\/div><div class=\"wpforms-field-container\"><div id=\"wpforms-8738-field_0-container\" class=\"wpforms-field wpforms-field-name\" data-field-id=\"0\"><fieldset><legend class=\"wpforms-field-label\">Your Name <span class=\"wpforms-required-label\" aria-hidden=\"true\">*<\/span><\/legend><div class=\"wpforms-field-row wpforms-field-medium\"><div class=\"wpforms-field-row-block wpforms-first wpforms-one-half\"><input type=\"text\" id=\"wpforms-8738-field_0\" class=\"wpforms-field-name-first wpforms-field-required\" name=\"wpforms[fields][0][first]\" aria-errormessage=\"wpforms-8738-field_0-error\" required><label for=\"wpforms-8738-field_0\" class=\"wpforms-field-sublabel after\">\u524d\u4e00\u9875<\/label><\/div><div class=\"wpforms-field-row-block wpforms-one-half\"><input type=\"text\" id=\"wpforms-8738-field_0-last\" class=\"wpforms-field-name-last wpforms-field-required\" name=\"wpforms[fields][0][last]\" aria-errormessage=\"wpforms-8738-field_0-last-error\" required><label for=\"wpforms-8738-field_0-last\" class=\"wpforms-field-sublabel after\">\u540e\u4e00\u9875<\/label><\/div><\/div><\/fieldset><\/div><div id=\"wpforms-8738-field_9-container\" class=\"wpforms-field wpforms-field-name\" data-field-id=\"9\"><fieldset><legend class=\"wpforms-field-label\">Your Child&#039;s Name (if you&#039;re a parent or guardian completing this form)<\/legend><div 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aria-hidden=\"true\">*<\/span><\/label><input type=\"email\" id=\"wpforms-8738-field_1\" class=\"wpforms-field-medium wpforms-field-required\" name=\"wpforms[fields][1]\" spellcheck=\"false\" aria-errormessage=\"wpforms-8738-field_1-error\" required><\/div>\t\t<div id=\"wpforms-8738-field_2-container\"\n\t\t\tclass=\"wpforms-field wpforms-field-text\"\n\t\t\tdata-field-type=\"text\"\n\t\t\tdata-field-id=\"2\"\n\t\t\t>\n\t\t\t<label class=\"wpforms-field-label\" for=\"wpforms-8738-field_2\" >your with parent<\/label>\n\t\t\t<input type=\"text\" id=\"wpforms-8738-field_2\" class=\"wpforms-field-medium\" name=\"wpforms[fields][2]\" >\n\t\t<\/div>\n\t\t<div id=\"wpforms-8738-field_10-container\" class=\"wpforms-field wpforms-field-text\" data-field-id=\"10\"><label class=\"wpforms-field-label\" for=\"wpforms-8738-field_10\">Where do you live? (State \/ Country)<\/label><input type=\"text\" id=\"wpforms-8738-field_10\" class=\"wpforms-field-medium\" name=\"wpforms[fields][10]\" aria-errormessage=\"wpforms-8738-field_10-error\" ><\/div><div id=\"wpforms-8738-field_5-container\" class=\"wpforms-field wpforms-field-select wpforms-field-select-style-classic\" data-field-id=\"5\"><label class=\"wpforms-field-label\" for=\"wpforms-8738-field_5\">What condition has shaped your experience that you\u2019re sharing here today?<\/label><select id=\"wpforms-8738-field_5\" class=\"wpforms-field-medium\" name=\"wpforms[fields][5]\"><option value=\"Coats&#039; Disease\"  class=\"choice-1 depth-1\"  >Coats' Disease<\/option><option value=\"FEVR\"  class=\"choice-2 depth-1\"  >FEVR<\/option><option value=\"Norrie Disease\"  class=\"choice-3 depth-1\"  >Norrie Disease<\/option><option value=\"PFVS\"  class=\"choice-6 depth-1\"  >PFVS<\/option><option value=\"ROP\"  class=\"choice-5 depth-1\"  >ROP<\/option><option value=\"Congenital X-Linked Retinoschisis\"  class=\"choice-4 depth-1\"  >Congenital X-Linked Retinoschisis<\/option><option value=\"Stickler Syndrome\"  class=\"choice-7 depth-1\"  >Stickler Syndrome<\/option><\/select><\/div><div id=\"wpforms-8738-field_6-container\" class=\"wpforms-field wpforms-field-textarea\" data-field-id=\"6\"><label class=\"wpforms-field-label\" for=\"wpforms-8738-field_6\">Please share your experience with a rare retinal disease. <\/label><textarea id=\"wpforms-8738-field_6\" class=\"wpforms-field-medium\" name=\"wpforms[fields][6]\" aria-errormessage=\"wpforms-8738-field_6-error\" aria-describedby=\"wpforms-8738-field_6-description\" ><\/textarea><div id=\"wpforms-8738-field_6-description\" class=\"wpforms-field-description\">Feel free to share as much or as little as you would like. You can share facts about yourself, a fun story, a passionate thought, etc. <\/div><\/div><div id=\"wpforms-8738-field_7-container\" class=\"wpforms-field wpforms-field-radio\" data-field-id=\"7\"><fieldset><legend class=\"wpforms-field-label\">May we post your testimonial (or a portion of it) on our digital platforms (website, socials, eblasts)? <span class=\"wpforms-required-label\" aria-hidden=\"true\">*<\/span><\/legend><ul id=\"wpforms-8738-field_7\" class=\"wpforms-field-required\"><li class=\"choice-1 depth-1\"><input type=\"radio\" id=\"wpforms-8738-field_7_1\" name=\"wpforms[fields][7]\" value=\"Yes\" aria-errormessage=\"wpforms-8738-field_7_1-error\" required ><label class=\"wpforms-field-label-inline\" for=\"wpforms-8738-field_7_1\">Yes<\/label><\/li><li class=\"choice-2 depth-1\"><input type=\"radio\" id=\"wpforms-8738-field_7_2\" name=\"wpforms[fields][7]\" value=\"No\" aria-errormessage=\"wpforms-8738-field_7_2-error\" required ><label class=\"wpforms-field-label-inline\" for=\"wpforms-8738-field_7_2\">No<\/label><\/li><li class=\"choice-3 depth-1 wpforms-other-choice\"><input type=\"radio\" id=\"wpforms-8738-field_7_3\" data-other-choice=\"true\" name=\"wpforms[fields][7]\" value=\"Other\" aria-errormessage=\"wpforms-8738-field_7_3-error\" required ><label class=\"wpforms-field-label-inline\" for=\"wpforms-8738-field_7_3\">Other<\/label><\/li><\/ul><input type=\"text\" id=\"wpforms-8738-field_7_other\" class=\"wpforms-other-input wpforms-field-required wpforms-field-medium wpforms-hidden\" name=\"wpforms[fields][7][other]\" disabled=\"disabled\" required><\/fieldset><\/div><div id=\"wpforms-8738-field_8-container\" class=\"wpforms-field wpforms-field-file-upload\" data-field-id=\"8\"><label class=\"wpforms-field-label\" for=\"wpforms-8738-field_8\">Upload an image if you&#039;d like it attached to your testimonial.<\/label><div\n\t\tclass=\"wpforms-uploader \"\n\t\tdata-field-id=\"8\"\n\t\tdata-form-id=\"8738\"\n\t\tdata-input-name=\"wpforms_8738_8\"\n\t\tdata-extensions=\"jpg,jpeg,jpe,gif,png,bmp,tiff,tif,webp,avif,ico,heic,heif,heics,heifs,asf,asx,wmv,wmx,wm,avi,divx,mov,qt,mpeg,mpg,mpe,mp4,m4v,ogv,webm,mkv,3gp,3gpp,3g2,3gp2,txt,asc,c,cc,h,srt,csv,tsv,ics,rtx,css,vtt,mp3,m4a,m4b,aac,ra,ram,wav,x-wav,ogg,oga,flac,mid,midi,wma,wax,mka,rtf,pdf,class,tar,zip,gz,gzip,rar,7z,psd,xcf,doc,pot,pps,ppt,wri,xla,xls,xlt,xlw,mpp,docx,docm,dotx,dotm,xlsx,xlsm,xlsb,xltx,xltm,xlam,pptx,pptm,ppsx,ppsm,potx,potm,ppam,sldx,sldm,onetoc,onetoc2,onepkg,oxps,xps,odt,odp,ods,odg,odc,odb,odf,wp,wpd,key,numbers,pages,redux\"\n\t\tdata-max-size=\"1073741824\"\n\t\tdata-max-file-number=\"1\"\n\t\tdata-post-max-size=\"1073741824\"\n\t\tdata-max-parallel-uploads=\"4\"\n\t\tdata-parallel-uploads=\"true\"\n\t\tdata-file-chunk-size=\"2097152\">\n\t<div class=\"dz-message\">\n\t\t<svg  viewBox=\"0 0 640 640\" focusable=\"false\" data-icon=\"inbox\" width=\"50px\" height=\"50px\" fill=\"currentColor\" aria-hidden=\"true\">\n\t\t\t<path d=\"M352 173.3L352 384C352 401.7 337.7 416 320 416C302.3 416 288 401.7 288 384L288 173.3L246.6 214.7C234.1 227.2 213.8 227.2 201.3 214.7C188.8 202.2 188.8 181.9 201.3 169.4L297.3 73.4C309.8 60.9 330.1 60.9 342.6 73.4L438.6 169.4C451.1 181.9 451.1 202.2 438.6 214.7C426.1 227.2 405.8 227.2 393.3 214.7L352 173.3zM320 464C364.2 464 400 428.2 400 384L480 384C515.3 384 544 412.7 544 448L544 480C544 515.3 515.3 544 480 544L160 544C124.7 544 96 515.3 96 480L96 448C96 412.7 124.7 384 160 384L240 384C240 428.2 275.8 464 320 464zM464 488C477.3 488 488 477.3 488 464C488 450.7 477.3 440 464 440C450.7 440 440 450.7 440 464C440 477.3 450.7 488 464 488z\"\/>\n\t\t<\/svg>\n\n\t\t<span class=\"modern-title\">\n\t\t\t\t\t\t\tDrag &amp; 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