www.ebresearch.org

• property: og:site_name content: EB Research Partnership
• property: og:title content: EB Research Partnership
• property: og:description content: EB Research Partnership is the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth.
• property: og:image content: https://www.facebook.com/tr?id=452705851976254&ev=PageView&noscript=1
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/screenshot-2025-12-26-at-10-14-21-am_orig.png
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/screenshot-2025-12-26-at-10-13-39-am_orig.png
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/updated-mot-header-wtih-laurels-for-site_orig.png
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-highlights-header_3.png
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-billboard_orig.jpg
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-spin_1.jpg
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-people_orig.jpg
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-forbes_orig.jpg
• property: og:image content: https://www.ebresearch.org/uploads/1/0/4/4/104465755/press-rolling-stone_orig.jpg
• property: og:url content: https://www.ebresearch.org/
• name: description content: EB Research Partnership is the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth.
• name: keywords content: Epidermolysis Bullosa, EB, EB research, research, EB Research Partnership, EBRP, Action for Jackson, genetic disorder, children
• equiv: Content-Type content: text/html; charset=utf-8
• name: viewport content: width=device-width, initial-scale=1.0
• name: “facebook-domain-verification” content: “q25e7l4er8hpeuwcjhp1yxhlrvhty5"
• equiv: refresh content: time ; url = https://give.ebresearch.org/campaign/plunge-for-elodie-2025/c604173

• ​
• http://www.ebresearch.org/#
• http://www.ebresearch.org/what-is-eb.html
• http://www.ebresearch.org/life-with-eb.html
• http://www.ebresearch.org/resources.html
• http://www.ebresearch.org/our-impact.html
• http://www.ebresearch.org/scientific-advisory-board.html
• http://www.ebresearch.org/clinical-trials.html
• http://www.ebresearch.org/filsuvez.html
• http://www.ebresearch.org/krystal.html
• http://www.ebresearch.org/zevaskyn.html
• http://www.ebresearch.org/town-halls.html
• http://www.ebresearch.org/apply-for-a-grant.html
• http://www.ebresearch.org/sponsor.html
• http://www.ebresearch.org/ebactive.html
• http://www.ebresearch.org/events.html
• http://www.ebresearch.org/crypto.html
• http://www.ebresearch.org/stocks.html
• http://www.ebresearch.org/daf.html
• http://www.ebresearch.org/dfaf.html
• http://www.ebresearch.org/matter-of-time-film.html
• http://www.ebresearch.org/press.html
• http://www.ebresearch.org/videos.html
• http://www.ebresearch.org/our-mission.html
• http://www.ebresearch.org/financials.html
• http://www.ebresearch.org/venture-philanthropy.html
• http://www.ebresearch.org/supporter-spotlights.html
• http://www.ebresearch.org/board-of-directors.html
• http://www.ebresearch.org/staff.html
• https://www.ebresearch.org/store/checkout?cart=
• https://www.ebresearch.org/uploads/1/0/4/4/104465755/yale_case-20-039-a_rare_disease_registry__4__1.pdf
• http://www.ebresearch.org/uploads/1/0/4/4/104465755/ebrp-impact-booklet-2025.pdf
• http://www.ebresearch.org/salim.html
• http://www.ebresearch.org/clara.html
• http://www.ebresearch.org/ryan.html
• http://www.ebresearch.org//facebook.com/EBResearch
• http://www.ebresearch.org//twitter.com/EBResearch
• http://www.ebresearch.org//instagram.com/ebresearch
• http://www.ebresearch.org/careers.html
• Contact Us
• Donor Privacy Policy
• ​Our Mission

• Donate
• https://give.ebresearch.org/campaign/the-effect/c336502
• https://www.bonfire.com/store/eb-research-partnership-store/
• https://give.ebresearch.org/campaign/753678/donate?utm_source=ebresearch.org&utm_medium=organic&utm_campaign=eoy2025
• https://www.matteroftimefilm.com/
• https://www.matteroftimefilm.com/get-tickets.html
• https://www.billboard.com/music/concerts/eddie-vedder-matter-of-time-film-tribeca-1235998643/
• https://www.spin.com/2025/06/eddie-jill-vedder-matter-of-time/
• https://people.com/butterfly-disease-epidermolysis-bullosa-tayma-exclusive-11752362
• https://www.forbes.com/sites/greglicholai/2025/06/10/eddie-vedders-mission-amplifies-fight-against-kids-butterfly-disease/
• https://www.rollingstone.com/music/music-news/eddie-vedder-matter-of-time-documentary-clip-exclusive-1235357491/
• https://www.usnews.com/news/best-states/new-york/articles/2025-04-16/tribeca-festival-sets-lineup-with-miley-cyrus-billy-joel-and-eddie-vedder
• https://www.prnewswire.com/news-releases/eb-research-partnership-and-jill-and-eddie-vedder-raised-over-5m-to-benefit-life-saving-rare-disease-research-301986806.html
• https://www.rollingstone.com/music/music-news/metallica-billy-joel-doc-miley-cyrus-visual-album-tribeca-1235318942/
• https://www.today.com/popculture/movies/eddie-vedder-matter-of-time-trailer-rcna206383
• http://www.facebook.com/ebresearch
• http://www.instagram.com/ebresearch
• http://www.twitter.com/ebresearch
• http://www.youtube.com/c/ebresearchpartnership
• https://www.linkedin.com/company/eb-research-partnership/mycompany/
• https://vimeo.com/user32903419
• https://www.youtube.com/channel/UCbP0q0kCCcCdW17hKb-JQPQ
• Curator Privacy Policy
• Curator Terms of Use
• https://www.guidestar.org/profile/27-2417202
• https://www.charitynavigator.org/ein/272417202
• https://www.fundraisingregistration.com/seal/certificate/819f46e52c25763a55cc642422644317blu

            Domain Name: EBRESEARCH.ORG
Registrar: GoDaddy.com, LLC
Domain Status: client delete prohibited
Domain Status: client renew prohibited
Domain Status: client transfer prohibited
Domain Status: client update prohibited
Domain Status: auto renew period
Registry Expiry Date: 2027-03-09T21:46:15.492Z
Creation Date: 2012-03-09T21:46:15.492Z
Updated Date: 2026-03-10T11:46:43.989Z
Name Server: NS41.DOMAINCONTROL.COM
Name Server: NS42.DOMAINCONTROL.COM
REGISTRAR Contact: GoDaddy.com, LLC
>>> Last update of RDAP database: 2026-03-11T08:04:15Z         

			Sitemap: https://www.ebresearch.org/sitemap.xml

User-agent: NerdyBot
Disallow: /

User-agent: dotbot
Crawl-delay: 10

User-agent: *
Disallow: /ajax/
Disallow: /apps/
Disallow: /https://give.ebresearch.org/give/335486/#!/donation/checkout
Disallow: /https://give.ebresearch.org/event/change-for-charley-casino-night/e621036
Disallow: /https://give.ebresearch.org/give/497591/#!/donation/checkout
Disallow: /epidermolysis-bullosa.html
Disallow: /research.html
Disallow: /get-involved.html
Disallow: /leadership.html
Disallow: /media.html
Disallow: /about-us.html
Disallow: /rarediseaseday.html
Disallow: /http://https://plungeforelodiestore.weebly.com/
Disallow: /fundraise.html
Disallow: /https://give.ebresearch.org/campaign/plunge-for-elodie-2024/c533307
Disallow: /https://give.ebresearch.org/campaign/plunge-for-elodie-2025/c604173
Disallow: /teameb.html
Disallow: /tester.html
Disallow: /plunge-for-elodie-974985.html
Disallow: /curator.html
Disallow: /curator-calendly.html
Disallow: /invitation.html
Disallow: /seattle.html
Disallow: /rfd.html
Disallow: /give-crypto.html
Disallow: /msgnyc.html
Disallow: /rareventure.html
Disallow: /rfdwaitlist.html
Disallow: /townhallrsvp.html
        

Teknisk SEO

On-Page SEO

Innhold og UX