{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T15:05:44Z","timestamp":1789571144610,"version":"build-2803163510"},"reference-count":10,"publisher":"Wiley","issue":"S2","license":[{"start":{"date-parts":[[2025,9,19]],"date-time":"2025-09-19T00:00:00Z","timestamp":1758240000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2025,9,19]],"date-time":"2025-09-19T00:00:00Z","timestamp":1758240000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Dermatology"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:p>Epidermolysis bullosa (EB) is a rare genetic disorder requiring intensive and costly care, often diagnosed in infancy when families are unprepared for the financial burden. We analyzed 160\u2009U.S.\u2010based crowdfunding campaigns for living EB patients, extracting data on demographics and financial needs. 33.8% of patients requested financial support for wound care supplies, 36.9% of patients requested support for travel costs, and 9.4% of patients requested support with special clothing or bedding. These findings highlight persistent, unresolved financial needs for EB\u2010related care.<\/jats:p>","DOI":"10.1111\/pde.70047","type":"journal-article","created":{"date-parts":[[2025,9,19]],"date-time":"2025-09-19T09:31:26Z","timestamp":1758274286000},"page":"76-78","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Understanding the Needs and Financial Challenges of Patients With Epidermolysis Bullosa: Insights From Donation Requests"],"prefix":"10.1111","volume":"43","author":[{"ORCID":"https:\/\/orcid.org\/0009-0002-0671-1519","authenticated-orcid":false,"given":"Elika D.","family":"Javaheri","sequence":"first","affiliation":[{"name":"Mayo Clinic Alix School of Medicine  Scottsdale Arizona USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0004-4722-8915","authenticated-orcid":false,"given":"Vivian C.","family":"Iloabuchi","sequence":"additional","affiliation":[{"name":"Mayo Clinic Alix School of Medicine  Scottsdale Arizona USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Dupuy","sequence":"additional","affiliation":[{"name":"Department of Dermatology Phoenix Children's Hospital  Phoenix Arizona USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nessa","family":"Aghazadeh Mohandesi","sequence":"additional","affiliation":[{"name":"Department of Dermatology, Clinical Genomics, and Pediatrics Mayo Clinic  Rochester Minnesota USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2025,9,19]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1001\/jamadermatol.2018.4673"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1111\/pde.14340"},{"key":"e_1_2_9_4_1","unstructured":"\u201cDebra of America: Wound Care Distribution Program \u201d2025 https:\/\/www.debra.org\/get\u2010help\/wounds."},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1136\/medethics\u20102020\u2010106676"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2021.114105"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023\u2010019\u20101279\u2010y"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0229760"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.34763\/jmotherandchild.20212503SI.d\u201021\u201000022"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1093\/sf\/soab076"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2017.02.008"}],"container-title":["Pediatric Dermatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.70047","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/pde.70047","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/pde.70047","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T14:47:48Z","timestamp":1789570068000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/pde.70047"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,9,19]]},"references-count":10,"journal-issue":{"issue":"S2","published-print":{"date-parts":[[2026,8]]}},"alternative-id":["10.1111\/pde.70047"],"URL":"https:\/\/doi.org\/10.1111\/pde.70047","archive":["Portico"],"relation":{},"ISSN":["0736-8046","1525-1470"],"issn-type":[{"value":"0736-8046","type":"print"},{"value":"1525-1470","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,9,19]]},"assertion":[{"value":"2025-07-02","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-09-11","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2025-09-19","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}