Tackling Rare Disease Globally
Main Article Content
Abstract
Editors' Introduction to Volume 9 Issue 2
Article Details
References
Agboka, Godwin. (2013). Participatory Localization: A Social Justice Approach to Navigating Unenfranchised/Disenfranchised Cultural Sites. Technical Communication Quarterly, 22(1), 28-49. DOI: 10.1080/10572252.2013.730966
Allison, Lauren E., Ruysen, Harriet, Sánchez Alva, María J., Agravet, Priyesh, Loucaides, Eva M., Kumar, Meghan B., Molina-Garía, Alexandra, Sebina, Ismail, Fitchett, Elizabeth J.A., Russell, Neal, & Lawn, Joy E. (2025). Who gets funded? Global analysis of research funding for newborn health and stillbirth in fragile and non-English speaking countries, 2016–2020. SSM - Health Systems, 5, 100144. https://doi.org/10.1016/j.ssmhs.2025.100144
Fragile X International. (2025, May 26). #Resolution4Rare – A landmark resolution. https://fraxi.org/resolution4rare/
Gonzales, Laura. (2022). Designing multilingual experiences in technical communication. University Press of Colorado.
Gordin, Michael. (2015). Absolute English: Science once communicated in a polyglot of tongues, but now English rules alone. How did this happen—and at what cost? Aeon.co https://aeon.co/essays/how-did-science-come-to-speak-only-english
Hommes, Franziska, Monzó, Helena B., Ferrand, Rashida A., Harris, Meggan, Hirsch, Lioba A., Besson, Emilie K., Manton, John, Togun, Toyin, & Roy, Robindra B.. (2021). The words we choose matter: recognising the importance of language in decolonising global health. Lancet, 9(7), e897-e898.
IFPMA. (2024). About us. https://www.ifpma.org/about-us/
IFPMA. (2025, May 24). IFPMA welcomes the adoption of the WHA78 Resolution on rare diseases. .
https://www.ifpma.org/news/ifpma-welcomes-the-adoption-of-the-wha78-resolution-on-rare-diseases/
IRDiRC (International Rare Diseases Research Research Consortium). (2025). WHO Member States officially adopt the first-ever Resolution on Rare Diseases. https://irdirc.org/who-member-states-officially-adopt-the-first-ever-resolution-on-rare-diseases/
NIH (National Institutes of Health). (2024, April). NIH Grants Policy Statement. https://grants.nih.gov/grants/policy/nihgps/html5/section_16/16.2_eligibility.htm
Rare Disease International. (2025, May 24). N on-state actor individual statement by Rare Disease International.
Rasmussen, Lauge Neimann & Montgomery, Paul. (2018). The prevalence of and factors associated with inclusion of non-English language studies in Campbell systematic reviews: A survey and meta-epidemiological study. Systematic Reviews, 7(129) https://doi.org/10.1186/s13643-018-0786-6
World Health Organization. (2023). What worked? What didn’t? What’s next? 2023 progress report on the Global Action Plan for Healthy Lives and Wel-being for All. https://www.who.int/publications/i/item/9789240073371
World Health Organization. (2025, February 10). Rare diseases: a global health priority for equity and inclusion (Resolution 156(16)).https://apps.who.int/gb/e/e_eb156.html
World Health Organization. (2024, May 22). Frequently Asked Questions. Who.int. https://www.who.int/initiatives/sdg3-global-action-plan/frequently-asked-questions
World Health Organization. (2024, November 22). Donors making a difference: Combating antimicrobial resistance.