https://www.ebmrf.org/home daily 1.0 2025-08-06 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1728516130374-QFM5QEZP75F1NFD35D34/2.jpg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1579808839548-1JG3QJPPC5AZ16659R68/3.png Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1728516378718-XCMI59OFF48GFTH4GFYQ/1.jpg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1728516387286-KJGJNJZKIX0W8RS1J01A/WHY%2525252BWE%2525252BFIGHT%2525252BFOR%2525252BA%2525252BCURE%2525252B%25252525281%2525252529.jpg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1728516350782-QKMQCTWUFC4R0XJ6A3U8/4.jpg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1585082701331-EHH2MADZ059C3U1KQ0BZ/Screen+Shot+2020-03-24+at+1.44.45+PM.png Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587620234427-46ITNQ55LC2R420XDE5L/image001.png Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587622192330-6S4J2LJE31L5P3HJM20H/Ed%2BPerformance%2B1%2B%2528002%2529.jpg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1602211693770-WCV3JXI2O0U40GUSHM7F/image-asset.png Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1602211968485-OG61YGPIBC1A84DQ5Y09/Copy+of+Orange+Hanging+Spiders+and+Bats+Halloween+Flyer.png Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1613001490451-6JXFHXIS6AVAEEIH2X15/kc%252Bbutterfly.jpg Home photo credit :Shayan Asgharnia https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1612336902355-6WCQW2LT21LQK7U44BBB/IMG_7818.JPG Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1b43ff80-5a85-4acd-9698-ecee4d469e8c/Untitled+design+%2812%29.jpg Home - Huge FDA News*** In May 2023, the US Food and Drug Administration (FDA) approved Krystal Biotech’s Vyjuvek (beremagene geperpavec), a topical gene therapy drug, for wound treatment in dystrophic epidermolysis bullosa with COL7A1 mutations. The EBMRF was instrumental in providing seed money for this research and the outcome is a giant step forward for EB patients. For a full discussion, please see Treatment. Additionally, A topical gel, Filsuvez (birch triterpenes), was approved by the FDA in December 2023 for treatment of wounds in patients aged 6 months and older with junctional and dystrophic epidermolysis bullosa. https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1589487114715-SB8ECWP9YGVHEG3LVDA5/Screen+Shot+2020-05-14+at+1.10.43+PM.png Home - Bulletin Board https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1563558760852-2L8JZBMNPYFBR79MVX2H/image-asset.jpeg Home https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1589488284994-TDACDUC3L7VSWPXZ4MS6/hvkhvjlb.kb%253Bkj.jpg Home https://www.ebmrf.org/who-we-fund daily 0.75 2024-04-23 https://www.ebmrf.org/who-we-fund/stanford-university monthly 0.5 2024-04-23 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587620076122-IM1HXUNX4TVVKJXVQHMP/0003.jpg Who We Fund - Stanford University https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587620077659-E0ZAMRJ1EIXDUVTNQ6I3/0004.jpg Who We Fund - Stanford University https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/3eb17032-9f67-4e94-a9eb-5463f7f754e7/Oro_EBMRF+update+March+2024V1+%28002%29_Page_2.jpg Who We Fund - Stanford University - 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/v1/5d2f7009089a1900010f2d23/1582317521169-0VBP794DLYA2KT7TVB4G/Stanford-lab-photo.jpg Who We Fund - Stanford University https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/8fd99bd5-aa73-4294-b26d-e5497a9c83fd/Oro_EBMRF+update+March+2024V1+%28002%29_Page_3.jpg Who We Fund - Stanford University - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.ebmrf.org/who-we-fund/university-of-colorado-anschutz-medical-school monthly 0.5 2024-04-23 https://www.ebmrf.org/who-we-fund/university-of-southern-california monthly 0.5 2020-02-21 https://www.ebmrf.org/who-we-fund/the-epidermolysis-bullosa-clinical-research-consortium monthly 0.5 2020-07-02 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582317400606-SN7ZQFOBY878ADU2L439/ebcrc-photo.2+%281%29.jpg Who We Fund - The Epidermolysis Bullosa Clinical Research Consortium https://www.ebmrf.org/who-we-fund/university-of-minnsota monthly 0.5 2024-04-23 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582317659842-SS3HCKQGSOXLTVXSZYBM/sota.jpg Who We Fund - University of Minnesota https://www.ebmrf.org/bulletin-board-archive daily 0.75 2020-11-19 https://www.ebmrf.org/bulletin-board-archive/hbo-charity-partner-for-the-flight-attendant monthly 0.5 2020-11-19 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1605812561076-HKB1FQ4X8YX9MGPWQ4A5/IMG_5891+2.jpeg Bulletin Board Archives - HBO Charity Partner for The Flight Attendant https://www.ebmrf.org/bulletin-board-archive/backstage-pass monthly 0.5 2020-11-19 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1605812124227-DI4CL5UF83IBP91W80GW/wound+care.+we+care.+%281%29.png Bulletin Board Archives - Backstage Pass https://www.ebmrf.org/bulletin-board-archive/celebrity-bake-sale monthly 0.5 2020-11-19 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1605811590102-TSTVEYPYAQ3RNQPJ26BY/Screen+Shot+2020-11-19+at+10.46.18+AM.png Bulletin Board Archives - celEBrity Bake Sale! https://www.ebmrf.org/bulletin-board-archive/check-out-our-new-video monthly 0.5 2020-11-19 https://www.ebmrf.org/about-ebmrf daily 0.75 2020-07-02 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1576630505222-LAUTP1DI6LQF8WIUUA6K/People-Mag-Family-Photo-980x600+%281%29.jpg About EBMRF The Joseph Family https://www.ebmrf.org/overview daily 0.75 2020-07-02 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1579891519531-GFMLW6NTZ4ER9BI07ZHU/Tolar-lab-from-video-980x600.jpg Overview https://www.ebmrf.org/board daily 0.75 2023-09-29 https://www.ebmrf.org/faq daily 0.75 2020-04-22 https://www.ebmrf.org/contact-us daily 0.75 2020-01-24 https://www.ebmrf.org/shop-for-eb daily 0.75 2024-04-23 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1583950791912-HV8DC4XPNFCTQTHCI9VN/nu%2Bskin%2Bagain.jpg Shop For EB https://www.ebmrf.org/we-are-inspired-by daily 0.75 2023-11-09 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587624935691-90JUOUCN2KP26M34Q3BL/spirit%2Baward%2Bphoto.jpg We Are Inspired By... - We are inspired by… 2018 Debra Spirit Award Honorees-Brandon Joseph, Daisy Sherman and Lizzy Hendrickson, Congratulations to these EB Warriors! https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582327144958-WCQQRI7O1SOE7CW045K3/dd.PNG We Are Inspired By... - We are inspired by… “Over the years, the art of drawing, painting, fashion and design helped me push through the numerous challenges life has thrown my way. It is because of art I have learned to try to live in the moment, not dwell on things that you can't change.” Learn more about Deanna Molinaro’s inspiring journey and see her beautiful artwork. https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1604015933049-KKBNHPOQRCQ8R171801H/7cfad69b-ccbc-430e-84ce-59ac25e9dc45-1018_butterfly_05.jpg We Are Inspired By... - We are inspired by… "I bet you can do a lot more than you think you can if you just try." That is the sentence that Henry DeAngelis, 18 of Des Moines, credits with making him realize he could do things like drive himself to school. DeAngelis has Epidermolysis bullosa, a disease that makes his skin very fragile and often leads to skin cancer. Photo credit Brian Powers. https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587527942723-ZH7B8QZEEULOSY07PZO0/G38A7413.jpg We Are Inspired By... - We are inspired by… "One day my doctor asked me if i wanted to be part of a study at Stanford University...It changed my entire life after that...I was coming out the other end after a few months of going through the trials and I was starting to get more energy, I was starting to get the ability to heal. That study with the grafting just completely got me out of bed, got me out of my house and I was able to participate in my kid's lives which is all I really ever wanted since I had them." - Lara Hernandez https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582326337032-IX5HH6HFZ23F19JXETRW/sam.PNG We Are Inspired By... - We are inspired by… Sam Schulz and his family are EB warriors. They, along with so many other EB patients, inspire and motivate us to keep fighting for a cure. Click link in bio to read his story... and get inspired. Photo credit Christiana Botic. https://www.ebmrf.org/articles daily 0.75 2025-12-03 https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587079114816-N5DSWI6A3DPH2JHMZQKS/0001.jpg Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587079114782-4QBWVA1UCX4MAHDME18V/0002.jpg Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587079116369-EYOGD82JPUPQPE3RFO8K/0003.jpg Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484264295-E8YV8T5QCSRI1G93P32B/1.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484264244-G906ZNN7FOARN5CVEK3Z/2.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484266739-253ZD2JJOH6B210N6Y1H/3.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484560142-WHDUTP9OIWGSE1RIQ8VL/4.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484547228-T9A2IL0OVS8EEX7WQIKQ/5.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484598142-V52FNCHICIL0Z1VAVDBK/6.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484742215-LYE5M3IHG2GUVMB7VZPQ/7.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587484620285-EE79DG0X3Z62Y6KASMC5/8.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587518429793-AQEA7EM71CLYQVSBKAPQ/0001+5.jpg Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913208297-4VJ41OA39ILFR3A9QMHJ/hr+1.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913222043-HCXOT0BUEFHHFP6S8O1A/HR+2.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913237298-XS0Q82IBOAGL1USP9ZNF/LA+1.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913250504-YZXU99PFAT7BDRU3BVGT/LA+2.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913266558-FMY5PXGQH0V9AWNQODX3/LA+3.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1713913279875-MXY0N190E9BFUPBR0IVR/LA+4.PNG Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587486021074-2X1B9FN89TS7EUAHK6O4/1.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587486020302-MXEAGLGIM7R70ARPFUV3/2.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587486659767-O908P5BP3R9X2TJ996TD/3.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587486643809-CB5L589IUEZ5WIA3DWNE/4.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587487258085-52B9BRE256216B6X0G5X/5.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587486857010-EQCMKE4BFRVU90JXAG3Q/6.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587487368957-DLXXHS06QESH2T4MM570/7.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587487507001-WBXXRY4QT88CA7B1G05O/8.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587498178529-XK69C9I779JMPS9HDXFW/1.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587498050077-R7L7ZWUGTHFWHXBCCTIA/2.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587498314102-ZCIMRC75Q7NKFSOPA1WC/3.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587498383646-O2O5WH9AA8LRX56JTPW7/4.png Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1587079549938-ESN5CS6FXFHXVKP2TSRP/0001+3.jpg Articles https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/7ab6a480-e56f-4d39-a80f-0f8757d2dac1/processed-BD18C97C-02D7-4869-A7A6-470973183E0E-EC22C9CA-5921-48B5-BF4F-8B8E5407CF8D.jpeg.jpeg Articles - 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We are grateful to Gabi and his family for their support. https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582315662532-PFDVWUQGZLVBGG7CY2OW/Art-Wine-fundraiser-min+%281%29.jpg Friends of EB Thanks to Leslie and Christina Minkey and SOTHEBY’S INTERNATIONAL for hosting their Art & Wine for EB fundraiser in San Carlos, with featured artists Christina Minkey, Emily Smith & Andrea Simons which raised awareness and funds for EB. https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582329083156-HU1S3DKAFQK737657TYS/walkin.PNG Friends of EB Kissell Family Annual Walk for EB Hope Foundation 2019 Update –Last year’s walk raised $35,000. In its 12-year history, the Walk for EB has raised a total of over $265,000! Kristy and David Kissell, along with family and friends, organize the Annual Walk for EB in Cincinnati, Ohio for their sons Carson & Kolby. For more information, contact: WalkForEB@gmail.com or ebhope.org Thank you Kissell Family! https://images.squarespace-cdn.com/content/v1/5d2f7009089a1900010f2d23/1582330066907-YOEPYSXMQIQCRL65738P/ian.jpg Friends of EB Ian Ziering (90210, Sharknado) took home $2500 as a finalist playing for The EBMRF on the Food Network’s deliciously hilarious show,Worst Cooks In America, Celebrity Edition. 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