Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project

Xinyi Zou; Jun Luo; Yuke Zhu; Wanting Xiang

doi:10.47297/wspiedWSP2516-250034.20261006

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Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project

Volume 10, Issue 6

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Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project
Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project
Zhejiang Wanli University, Ningbo, Zhejiang, 315100, China
Vol. 10, Issue 6, Pages: 146-149(2026)
Online First：11 August 2026，

Published：30 June 2026
DOI：10.47297/wspiedWSP2516-250034.20261006
Accepted：

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Zou Xinyi,Luo Jun,Zhu Yuke,et al.Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project[J].Journal of International Education and Development,2026,10(06):146-149.
DOI：

Zou Xinyi,Luo Jun,Zhu Yuke,et al.Toward Reproducible Rare Disease Philanthropy: Exploring the "1+X" Paradigm of the "Let Butterfly Fly" Project[J].Journal of International Education and Development,2026,10(06):146-149. DOI： 10.47297/wspiedWSP2516-250034.20261006.

摘要

Abstract

Patients with hereditary epidermolysis bullosa (EB) face weak medical support

social exclusion

and limited psychological care.Existing philanthropic projects lack systematic

replicable models. This study explores the economic logic of replicability through economies of scale and scope. Using a case study and descriptive statistics

we analyzed 81 surveys

drug price data

and two school outreach implementations of the "Let Butterfly Fly" project. Results show the standardized service package ("1") exhibits scale economy potential through reduced marginal replication costs

while modular adaptation ("X") shows scope economy potential via knowledge reuse across disease contexts. The two-school implementation provided initial cross-context adaptability evidence. Preliminary model-based estimates

requiring longitudinal validation

suggest the paradigm could reduce families' information search costs and improve care efficiency. This study offers a theoretical framework and early-stage practical reference for sustainable rare disease philanthropy.

关键词

Keywords

references

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