https://www.bardetbiedl.org/news daily 0.75 2025-05-12 https://www.bardetbiedl.org/news/foundation-fighting-blindness-exciting-new-announces-exciting-partnership-with-alma-to-enhance-mental-health-support monthly 0.5 2025-05-12 https://www.bardetbiedl.org/news/rhythm-pharmaceuticals-announces-positive-topline-results-from-pivotal-phase-3-clinical-trial-evaluating-setmelanotide-in-bardet-biedl-and-alstrm-syndromes monthly 0.5 2020-12-23 https://www.bardetbiedl.org/news/example-blog-post-1-he4b9-klw4t-hpfs5-4myga-6mszr-3akn7-3xbex-sl33y-mzlm5-dgjmy-hwz76-pawjl-at4xz-6ylde-trkap-62gyg-9493m-l5pf4-6p6ph-crplc-dhnjn-xgpyz-kzsm5-ngpba-bcrj5-j9zn2-sb87j-cstdg monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/example-blog-post-1-he4b9-klw4t-hpfs5-4myga-6mszr-3akn7-3xbex-sl33y-mzlm5-dgjmy-hwz76-pawjl-at4xz-6ylde-trkap-62gyg-9493m-l5pf4-6p6ph-crplc-dhnjn-xgpyz-kzsm5-ngpba-bcrj5-j9zn2-sb87j monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/link-for-webinar-of-dr-max-nachurys-presentation monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/communication-skills-of-individuals-diagnosed-with-bbs monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/update-on-gene-therapy-for-retinal-degeneration-trial monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/easy-ways-you-can-support-bbs-research monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/bbs-weight-management-study monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/cribbs-worldwide monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/donate-to-the-bbs-fund monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/more-on-crispr monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/a-rare-disease-registry-at-work monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/fundraising-for-bbs-research-and-outreach monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/nonprofit-registration-update monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/launching-a-bbs-registry-a-path-to-treatment monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/crispr-a-huge-leap-forward-for-gene-therapy monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/a-visit-to-the-bbs-center-of-excellence monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/from-the-bbs-center-of-excellence monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/ffb-visions-2013-conference-protecting-retinas monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/ffb-visions-2013-conference-ergs-vs-octs monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/the-strange-world-of-drugs-for-rare-diseases monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/those-marvelous-zebrafish monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/a-new-approach-to-treating-retinal-degeneration monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/conference-highlights-dr-nico-katsanis monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/conference-highlights-dr-erica-davis monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/exampledr-elise-heon-ophthalmologist-from-torontos-hospital-for-sick-children monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/dr-eric-pierce-presents-on-retinal-degeneration-therapies monthly 0.5 2020-02-02 https://www.bardetbiedl.org/news/dr-haws-presents-on-kidneys-in-bbs monthly 0.5 2020-02-02 https://www.bardetbiedl.org/home daily 1.0 2026-03-30 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/56a53105-e7d2-44fa-ad2a-29ca87a4758d/Untitled+%281080+x+400+px%29+%284%29.png Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/bf7f6b1d-f506-4d0d-8d84-fd962a6a61ec/DSC08174.jpg Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/d2888cac-3082-4a79-b8ba-532a6ed4c06e/unsplash-image-DqgMHzeio7g.jpg Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744321975705-XGIXPWZU4NFQKQTCQSTP/IMG_1290.JPG Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744321982977-SJ9HQZWP18TLDRMQDH9D/IMG_0806.JPG Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744321976547-OSQFOW3CVBHQCKMHCY13/FullSizeRender.jpg Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744321985628-07VUGD8AXI4BL2IH1RX0/DSC03397+%282%29.JPG Home https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1605117322830-BD98C5IECQIL9O6CUQ36/IMG_0042+copy.jpg Home - Family Resources The Bardet Biedl Syndrome Foundation is dedicated to improving the lives of individuals and families affected by BBS. Our mission is to build a community of support for individuals and families, provide information about BBS, and promote science and research to improve the lives of individuals with Bardet Biedl Syndrome. RECENTLY DIAGNOSED? Hear directly from the BBS community — read real stories, listen to interviews, and discover what’s possible. Explore BBS Stories here. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/0e0f4294-f665-476a-9102-b06af7eebb0e/istockphoto-975466384-612x612.jpg Home - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/about daily 0.75 2025-04-15 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1605544220163-WS31PEOCZ30J3CQPP1WN/2018-07-01%252Bsummer%252B197054.jpg About https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/db3a2460-32b3-41ea-8f90-44631f520aba/IMG_6229.jpg About https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1606748624733-6RS4DEPGLYGFCLXUXYDJ/BBSF+Nate+1.JPG About https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/220f41f5-d301-4307-802b-1fe6b439d76c/2016-06-19+summer+137547.jpg About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/d01a333c-cb00-4cc7-8c2d-d16024e70ec0/Klassen+family+photo.JPG About - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/2024-bbs-conference daily 0.75 2024-02-28 https://www.bardetbiedl.org/donate daily 0.75 2024-03-08 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327738652-Y911HG92BYDLQN1NIH4G/2012-06-16+BBS+conference+521721.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1603159114140-3HZ3X2MBCBOR5C42A6WI/2.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1603159684721-ZH8FNTLB02X7G6X87BRB/IMG_2144.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1603159127353-A8HLS6HJSKMN704CAFXS/5.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327865042-0KLNURACCUKHFVQNERNB/2012-06-16+BBS+conference+52163.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583197844741-07QF53DFR88SD6VLGIU9/2018-06-29%252BiPhone%252B197424.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327717659-S7UCSQCC5VAM7M9OII9N/5e56be431eea5.image.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327739570-7WYD1F3A61U8534PAH4C/2018-07-01%2Bsummer%2B197038.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201338887-33GR0OWDWCWBCKFMXAL6/IMG_20170516_171714.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1603159072477-R3BZ0FM6VCDGQAMHL2UA/4.jpg Donate https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744328173953-GG71VAUH8DX4L7WT8UMK/Tyler%2BBug+%281%29.jpg Donate 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Rocky Ride 2019 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201276691-YQEBUCH424UPATKIM73I/IMG_20170718_094526.jpg Rocky Ride 2019 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277346-YYCMEPG0POMVXIZ7LI7I/Nathanael%2Band%2BTheo%2B2018.JPG Rocky Ride 2019 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277347-8J78Z80YF1L8M8XWVVUX/At%2Bthe%2BSteps%2BSkupp%2BOgden%2BDiAntonio.JPG Rocky Ride 2019 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277641-04CPJ0THRZLO9PUAIL6M/Rocky%2BStatue.jpg Rocky Ride 2019 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201338887-33GR0OWDWCWBCKFMXAL6/IMG_20170516_171714.jpg Rocky Ride 2019 https://www.bardetbiedl.org/rocky-ride-2019-whittle daily 0.75 2020-03-03 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583200702044-5ELQ6ZOYIM28VP4LV388/BBS%2BFundraiser%2BBanner%2B-%2B2019-01.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201048946-E8D6YLCY0UBVT7CA8K3K/IMG_20181013_141015817_HDR.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201036952-8UIZJ47W13CWIMBXDL1C/IMG_20181013_141602034_HDR.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201274851-PS4N6RPI334BVYR0QQB2/Rocky%2BRide%2BStart-1.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201274755-FG6TGZBA77MM3JLRYE91/Nathanael%2BJackson%2Bat%2BMemorial%2BArch.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201275466-YQ7OE4UTJFXDLJWW78ZG/Jefferys%2B2.jpeg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201275420-2NUMFU7FB2JIR7I7Y15P/IMG_20181013_141323613_HDR.jpg Rocky Ride 2019 Whittle 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https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277346-YYCMEPG0POMVXIZ7LI7I/Nathanael%2Band%2BTheo%2B2018.JPG Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277347-8J78Z80YF1L8M8XWVVUX/At%2Bthe%2BSteps%2BSkupp%2BOgden%2BDiAntonio.JPG Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201277641-04CPJ0THRZLO9PUAIL6M/Rocky%2BStatue.jpg Rocky Ride 2019 Whittle https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201338887-33GR0OWDWCWBCKFMXAL6/IMG_20170516_171714.jpg Rocky Ride 2019 Whittle https://www.bardetbiedl.org/family-resources daily 0.75 2025-06-25 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1605146356543-FLXLSH0L61TW95RKBW46/2018-07-01%2Bsummer%2B197083.jpg Family Resources https://www.bardetbiedl.org/bbs-international daily 0.75 2020-11-22 https://www.bardetbiedl.org/what-is-bbs daily 0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327740374-1FTYDVSSMGFXI25V4A6F/8a119c14-3c85-4c76-bbcd-5f4008f7f370+%281%29.jpeg What is BBS? https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581564347651-OET0RSQ8PXDB2P8NXN9C/2018-06-30%2Bsummer%2B196838.jpg What is BBS? https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581554244531-K9KN8TRR91L2IKGUNILY/IMG_7678.jpeg What is BBS? https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744327738777-8R4AT36786YJI7ET823X/2012-06-16+BBS+conference+52168.jpg What is BBS? https://www.bardetbiedl.org/get-involved-landing daily 0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1604335714457-MXF13WJIV8T097CQSBUG/One%2BShining%2BMoment-29.jpg How You Can Get Involved https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1604336315946-L812CFS1CNRM8GVRIVGR/2018-06-30%2Bsummer%2B196905.jpg How You Can Get Involved https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1605548737270-VBBLBI6G4VN8ZJF9YANJ/image.jpeg How You Can Get Involved https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1605146090491-Z064RUQV2Z9J9WY8LBDB/2018-07-01+summer+197032.jpg How You Can Get Involved https://www.bardetbiedl.org/connect-with-bbs-families daily 0.75 2020-11-22 https://www.bardetbiedl.org/events daily 0.75 2025-09-16 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744388868624-2UA5SJEG1QXOV9F9CUKT/100K+Challenge+Ogden+Photo.jpg Events https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1744388865615-N85R5B98A2WBRLMBDDE9/One%2BShining%2BMoment-29.jpeg Events https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/32eda419-3d52-48c4-a0cb-689f95045c11/image-7.png Events https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1695760734701-BFZRLBWPA83HPE3R3HNW/PXL_20221015_212247660.jpg Events 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https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581564438128-PSOGJ87MKQTYDKVX7YZ2/2018-07-01%252Bsummer%252B197054.jpg Conference (Copy) https://www.bardetbiedl.org/2024-conference-registration-form daily 0.75 2024-02-27 https://www.bardetbiedl.org/bbs-global-day-walkathon-form daily 0.75 2022-08-15 https://www.bardetbiedl.org/theo-rocky-ride daily 0.75 2023-10-09 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/fe145ea8-b6e7-4767-a1b5-ed33fbf4d438/BBS+Fundraiser+Banner+-+2023.png Theo - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/2be9582a-e417-466b-9571-e261ed59bd36/DSC08165.jpg Theo - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/7c32f3ad-ff0b-4684-a4bc-ca7186129f55/DSC08169.jpg Theo - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/45331c28-d00e-45ad-87e4-a31d85958564/DSC08174.jpg Theo - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/cruisin-with-emmie daily 0.75 2023-08-17 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/51a669ca-f81a-4458-a4fd-a83486dcf168/unnamed.png Cruisin with Emmie Car Show - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/zachary-rocky-ride daily 0.75 2023-09-21 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/fe145ea8-b6e7-4767-a1b5-ed33fbf4d438/BBS+Fundraiser+Banner+-+2023.png Zachary - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/9c545252-64b5-48ce-9a11-020315a1ce32/IMG_1976.jpg Zachary - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1a6dd9d8-aa4a-4b97-82c9-841e832c3069/unnamed.png Zachary - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/f4af07fb-7d4a-4276-8b1c-ec0a47f6fed5/unnamed4.jpeg Zachary - Rocky Ride - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/rhythm-pharma daily 0.75 2023-02-21 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/c1a4cf21-9af0-4290-a38b-48826dd37ae4/Screen+Shot+2022-10-21+at+12.19.18+PM.png Rhythm Pharma - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/meet-the-vanden-heuvels daily 0.75 2023-02-13 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1cf68da2-693e-4656-ae40-44ad40f106f4/IMG_2454.jpg Meet the Vanden Heuvels - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/meet-the-mills daily 0.75 2023-02-13 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/b24e271a-79cf-4d8e-898a-fdaa4ed0e477/311108108_5816411931722947_817481297377730052_n.jpeg Meet the Mills - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/2023-regional-gatherings daily 0.75 2023-10-12 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/f4e29d73-da7d-4487-8069-68ec3da9bacf/2022GroupPhotoDallasRegionalGathering+%281%29.jpg 2023 Regional Gatherings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/4d853e67-5185-4422-ba14-4012992caf6f/PXL_20220710_202320583.MP+%281%29.jpg 2023 Regional Gatherings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/0b37d7fe-68e6-4c4e-bff1-25e85a730b73/PXL_20220717_204439854.NIGHT+%281%29.jpg 2023 Regional Gatherings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/c94cc6a9-40e5-42e0-bb2a-cfebd9aaaf0d/PXL_20220723_193950608.MP+%281%29.jpg 2023 Regional Gatherings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/the-cara-show daily 0.75 2023-08-17 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/042b8c0e-37e2-4558-be70-6548dd212425/processed_21433d0b0fc7bb7c05610c87859697df5f0440c6867d87d4036cd1f38cefcc25_background_image.png The Cara Show - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/rockyride daily 0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/fe145ea8-b6e7-4767-a1b5-ed33fbf4d438/BBS+Fundraiser+Banner+-+2023.png Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1632854979681-LEYKRVVE4LN9X6UH1DAI/image001.jpg Rocky Ride 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Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201275959-UK3EP1IQ0W0J8HTK3EW5/N%2BJ%2BT%2BB%2Bat%2Bthe%2Btop.jpg Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1631209360388-NOBIV4FSU5307O9J0JNB/Top+of+the+Steps.jpg Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583201275466-YQ7OE4UTJFXDLJWW78ZG/Jefferys%2B2.jpeg Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1695760301575-7I7S8A345ICF5TNR0ZZ4/DSC08165.jpg Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1695760734701-BFZRLBWPA83HPE3R3HNW/PXL_20221015_212247660.jpg Rocky Ride 2023 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1631209153702-LV7SWF6MEQXC7H4B8TX7/Steps+Tim+Ben+and+Nathanael.jpg Rocky Ride 2023 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https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/8be679f5-b553-4ccd-898e-36ff7bc75fb0/BBS+Conference+Logo+without+sponsorship.jpg 2024 National Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/2022-conference-registration-form-copy daily 0.75 2024-02-27 https://www.bardetbiedl.org/new-page daily 0.75 2024-02-28 https://www.bardetbiedl.org/our-story daily 0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/866e7ab4-adac-466e-9842-8df2b9d5e8e3/Izzy.jpg Our Story https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/3eef88be-3b3d-4730-8952-2bf2b1dbc5cd/DSC08167.jpg Our Story ‘Rocky Ride’ riders pose atop the Rocky Steps at the Philadelphia Museum of Art after biking miles to raise money for BBSF. 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0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/3507c28f-2f01-4d61-a75d-8ad821bffe68/Untitled+%281080+x+400+px%29+%285%29.jpg BBS Genetics and Research - Make it stand out *Other includes SCLT1, TTC21B, and CEP76 https://www.bardetbiedl.org/clinical-practice daily 0.75 2025-09-16 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/37b20d6c-8ba3-45af-989e-b1c2fa9d2b4c/logo-badge-MCRF.png Clinical Practice - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/bbs-voices daily 0.75 2025-07-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/371800f0-a041-4f0b-9a4a-5d5ee739655f/2012-06-16+BBS+conference+52168.jpg BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/70e4a83c-3997-4a4b-8c20-551ae7e2f520/HANNAH.jpg BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/ebae626d-7add-4bd6-bd53-b66954e2a022/360AA14F00000578-0-image-a-30_1467898508408+%281%29.jpg BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/e525e230-bd30-403c-8ba9-c809ada95b8a/IMG_1148+%281%29.JPG BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/6637c701-ba01-44e5-bb6e-e224e5290222/8bb460e9-ac63-41dc-8599-2bd129b01c09-1_all_398.jpg BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/b81d81eb-1e45-44ad-831e-6ee598ea50f3/Screenshot+2025-04-30+134831.png BBS Voices - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/2025-regional-gatherings daily 0.75 2026-03-30 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/bb82a0c9-5128-435c-9f5b-8e2b1898fee9/istockphoto-975466384-612x612.jpg 2025 Regional Gatherings - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/our-partners daily 0.75 2025-04-11 https://www.bardetbiedl.org/cruisin-with-emmie-25 daily 0.75 2025-04-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/b24e271a-79cf-4d8e-898a-fdaa4ed0e477/311108108_5816411931722947_817481297377730052_n.jpeg Cruisin with Emmie Car Show 2025 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/4bcba1a9-d335-430e-aa8f-22e41f58267f/634d1e843fcdb.image.jpg Cruisin with Emmie Car Show 2025 - Make it stand out https://www.stardem.com/life/cruisin-with-emmie-raises-funds-for-bbs-research/article_573766b3-a623-5063-a3cc-ef6c9a020070.html https://www.bardetbiedl.org/connect-with-us daily 0.75 2025-07-23 https://www.bardetbiedl.org/rg-interest-form daily 0.75 2025-06-25 https://www.bardetbiedl.org/hannah-schneider-interview daily 0.75 2025-07-10 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1e401a51-95b8-4255-a40e-9cc72ea64b6e/A+Precious+Being+Breaking+Away+I.png Hannah Schneider Interview - Make it stand out A Precious Being Breaking Away This series of prints consists of distorted imagery that becomes ripped and broken as vision degenerates and becomes impaired. There is a central conflict in each piece between the soft and blurry imagery and the harsh, disrupting lines. The warm-toned, creamy paper makes the prints feel aged and delicate. The series speaks about my vision, a sense both greatly desired and loved, being severely vulnerable and fragile. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/e6a037ed-d30f-4a53-ae56-c264fe3fee77/Decay+Until+Nothing+Remains.png Hannah Schneider Interview - Make it stand out Decay Until Nothing Remains This piece consists of a series of 10 contact prints that gradually deteriorate until they turn white. These prints were accidentally bleached between being developed and fixed and were then grouped based on the extremity of their bleaching. This series represents my fear of future memories becoming unclear and corroded by any vision loss that I suffer from. As the prints deteriorate and turn to white, my memories decay along with them until nothing remains. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/87b95197-9afe-4db3-a1fd-ef46f1555e68/Screenshot+2025-06-24+153243.png Hannah Schneider Interview - Make it stand out Crystallizing Vision Loss This diptych contrasts two stages of vision loss. The image on the left represents early vision loss with decayed but still intact imagery, and the image on the right represents my fear of what my vision may eventually become. The prints were exposed using a projector for 1-2 seconds. The areas of inconsistent exposure and crystallized salt in the prints create darkened and cloudy spots that hinder how much can be seen. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/2be2cfe8-5010-408e-afa2-b777c230af78/Screenshot+2025-06-24+160423.png Hannah Schneider Interview - Make it stand out Burnt, Fragmented Moments This series consists of ten montages made from film burnt using a candle flame. The burnt areas create ripping, creasing, and an effervescent effect, representing deterioration. The color blue in each piece symbolizes the act of mourning for what once was. Some of the layers are translucent, appearing as a shadow of the past. These moments fragment and morph together into one as they decay with passing time. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/9a73321c-4a19-4795-a733-b7c6fa3d3825/Screenshot+2025-06-24+175209.png Hannah Schneider Interview - Make it stand out Consequential Information Overload These four posters are montages that utilize a mixture of headlines and article content and charts, along with personal retina scans taken in July. The text is rhythmic and distorted, communicating information that blurs together as it filters from the eye to the brain. These prints comment on the overwhelming amount of distressing information available online about BBS, and how there is only so much information that can be taken in until one shuts down. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/0acf70f2-c6c9-4b29-a5d8-39b99e562053/Screenshot+2025-06-24+175440.png Hannah Schneider Interview - Make it stand out Irrevocable Lifting These polaroid montages were created using lifted Polaroids that were digitally overlaid on each other. Parts of the image are rubbed away in each piece, showing the fragility of the imagery. The dust around the pieces represents the imagery, and one's vision, dissolving. This piece acts as a commentary on my fear of taking my vision for granted as it likely slowly and permanently drifts away, leaving darkness in its place. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/c533dc37-ee69-4283-b357-25fdbe33cda9/Swept+Away+by+the+Wind+I.png Hannah Schneider Interview - Make it stand out Swept Away by the Wind This series of fabric prints are colorized negatives with imagery that ranges from decipherable to unrecognizable. The muted colors in the imagery represent impacted color vision and the distorted imagery represents central vision loss. The pieces are wrinkled, translucent, and light, and are able to move freely in the wind. They are fragile, with the state of vision being delicate and able to blow away with the force of the wind, or one's genetics. https://www.bardetbiedl.org/robert-stigile-interview daily 0.75 2025-07-10 https://www.bardetbiedl.org/kathryn-blalock-interview daily 0.75 2025-06-26 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/fd9bc5a1-27a4-492e-9770-d16b45db868c/IMG_0191+%282%29.JPG Kathryn Blalock Interview - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/ab8865cb-4dbc-42d8-adcb-caffc834d4a5/IMG_4110+%281%29.JPG Kathryn Blalock Interview - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/fbdf375c-850c-47d0-8063-947e302f324b/IMG_6608.jpg Kathryn Blalock Interview - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952084905-DNPI30WZEH477YN9419V/IMG_5798.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952371012-N7BXMT1B708GA331192A/IMG_1450+%281%29.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952057892-3RL19J2NB6OF0IZ6FSNW/IMG_3224+%281%29.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952083767-29A1NISWC8UX7U8EXVWY/IMG_5785.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952184759-707NPJ9R8TQZPQ4VRN4U/IMG_5793.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952186788-YPVFVJJ3REJL3PYPIY46/IMG_2242.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952186571-VTY2CCQZER0TVHVGPKGU/IMG_0639.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952187685-Y542R4RQD5SN7DI1E0MM/IMG_8033.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952188508-9Q0R4RY05ZBO7YJ64HZL/IMG_9866.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952188950-3WKGX9PVPZ6ONOAP2AFD/IMG_0116.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952196660-Q8OIGR89XYAURLUO2AVT/IMG_0121+%281%29.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952190754-I437RJXY70KA0U03PC9E/IMG_4725+%281%29.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952189888-PKDNHBTM2FCZGYT2DYPW/IMG_0287.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952191186-N0YM6Q7S6CBC6CNXBREF/IMG_5674.jpg Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952193209-7WFZ6Z523OZX7NS5402T/IMG_2774+%281%29.JPG Kathryn Blalock Interview https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1750952194494-Q8IJV9TPKSSWBDH9Z2ED/IMG_7546.jpg Kathryn Blalock Interview https://www.bardetbiedl.org/diedre-vansyoc-story daily 0.75 2025-07-11 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/9c8ef38b-5912-4115-87fd-f277fc137736/8bb460e9-ac63-41dc-8599-2bd129b01c09-1_all_4105.jpg Diedre Vansyoc Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.bardetbiedl.org/joy-ravenel-interview daily 0.75 2025-07-10 https://www.bardetbiedl.org/merion-2020 daily 0.75 2020-02-13 https://www.bardetbiedl.org/merion-2020/ticket monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583197015370-OXJSL2E801899ZY2LJKK/1565827026652-01.png Merion 2020 - Merion Ticket https://www.bardetbiedl.org/basketball-2020-fundraiser daily 0.75 2020-03-03 https://www.bardetbiedl.org/basketball-2020-fundraiser/couple-ticket-1 monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583196608531-PREYYW4M94W4H5YIZQD6/bb1.png Basketball 2020 Fundraiser - Couple Ticket https://www.bardetbiedl.org/basketball-2020-fundraiser/donation monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581560121033-7EKF1351F7KTI0WEV8W9/1543588889068.png Basketball 2020 Fundraiser - Donation https://www.bardetbiedl.org/basketball-2020-fundraiser/child-ticket monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581559967444-LN6B7YNXW89AL9LS6LN0/bb3.png Basketball 2020 Fundraiser - Child Ticket https://www.bardetbiedl.org/basketball-2020-fundraiser/adult-ticket monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1581559937464-JDQRJT6POVCF5QYGA4EM/bb2.png Basketball 2020 Fundraiser - Adult Ticket https://www.bardetbiedl.org/eagles-2019 daily 0.75 2020-03-03 https://www.bardetbiedl.org/eagles-2019/eagles-raffle-ticket monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583195726605-QHMDH9R5152K8B5WKWDS/EAGLES-01.png Eagles 2019 - Eagles Raffle Ticket https://www.bardetbiedl.org/golf-tournament-2021 daily 0.75 2020-03-03 https://www.bardetbiedl.org/rocky-ride-tiles daily 0.75 2020-03-03 https://www.bardetbiedl.org/rocky-ride-tiles/sponsor-5mile monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583203440883-JBVM0SK4HUIIHS1BE4Y5/tandemYellow.png Rocky Ride Tiles - Sponsor $5/mile https://www.bardetbiedl.org/rocky-ride-tiles/champion monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583203172085-S7PNW6C6XVCQ973U40L4/image-asset-2.png Rocky Ride Tiles - Champion https://www.bardetbiedl.org/rocky-ride-tiles/contender monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583203154638-T6KSY4O68OJR8BO4BIBF/image-asset-1.png Rocky Ride Tiles - Contender https://www.bardetbiedl.org/rocky-ride-tiles/puncher monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583203080211-SRVUVNKE42ZPC4IZIURA/image-asset.png Rocky Ride Tiles - Puncher https://www.bardetbiedl.org/rocky-ride-tiles/sponsor-10mile monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583202946409-5GNK2JM2MP7D7D24VYZU/tandemPink.png Rocky Ride Tiles - Sponsor $10/mile https://www.bardetbiedl.org/rocky-ride-tiles/sponsor-3mile monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583202900385-LCCXABZBR87ALEHQPX1T/tandemGreen.png Rocky Ride Tiles - Sponsor $3/mile https://www.bardetbiedl.org/rocky-ride-tiles/sponsor-1mile monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583202861750-BK145FMR76LOVDUJVPRJ/tandemRed.png Rocky Ride Tiles - Sponsor $1/mile https://www.bardetbiedl.org/rocky-ride-tiles/f53jjyuenb533afcsn7og75o85ajqz monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583202409115-RMNQ2J1AX2Q36YB03FF7/bike_1.png Rocky Ride Tiles - Ride With Us https://www.bardetbiedl.org/rocky-ride-tiles/f53jjyuenb533afcsn7og75o85ajqz-kgb6w monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583202409115-RMNQ2J1AX2Q36YB03FF7/bike_1.png Rocky Ride Tiles - Run With Us https://www.bardetbiedl.org/cruising-for-connor daily 0.75 2020-03-03 https://www.bardetbiedl.org/cruising-for-connor/all-in monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583200357514-IGZMWNA1Y2SE31NF7NCB/Poker-03.png Cruising for Connor - All In https://www.bardetbiedl.org/cruising-for-connor/high-stakes monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583200338178-77601K7JEYPWGVHF1ZDU/Poker-01.png Cruising for Connor - High Stakes https://www.bardetbiedl.org/cruising-for-connor/raise-em monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583200311719-ERHC7PNF38J4U420OQIS/Poker-04.png Cruising for Connor - Raise 'Em https://www.bardetbiedl.org/cruising-for-connor/ante-up monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1583200269319-05KI3U5VZYQCZY0B6NKB/Poker-02.png Cruising for Connor - Ante Up https://www.bardetbiedl.org/store daily 0.75 2021-05-26 https://www.bardetbiedl.org/store/rare-disease-short-sleeve-unisex-t-shirt-1 monthly 0.5 2025-04-22 https://images.squarespace-cdn.com/content/v1/5e32341cff63c7446f3fdf1d/1644426385122-J4KOPFEQMWPPD8VDNLLF/unisex-staple-t-shirt-white-front-6203f3c9e8f89.jpg Store - 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