Rhetoric of Health & Medicine
Vol. 9, No. 2, pp. 119–127
Tackling Rare Disease Globally
Fernando Sánchez and Kim Hensley Owens
Introduction
Recently, Fernando attended a Spanish-speaking roundtable for individuals living with or caring for individuals with rare disease. At numerous times during the discussion, a tension between health literacy and translation seemed to arise. That is, while participants felt that more could be done to properly translate materials about medical treatments and pharmaceutical products into Spanish so that parents could make better informed decisions about their children’s treatment, they noted that the translated materials they already had access to had not been written for a lay Spanish-speaking audience. This forced caregivers, many of them uncertain about their English-speaking skills, to continually ask questions about certain treatment products and even then, they felt that they still did not understand what their medical providers or the representatives from pharmaceutical companies had told them.
This leads us to consider the larger context within which medical documentation in non-English languages are created and the implications that English as the lingua franca of science has for families like those above. Certainly, translation work is crucial to communicating health information, but what these participants of the roundtable seemed to be lamenting was that none of the specialized medications that they relied on were manufactured in Spanish-speaking countries. In such scenarios, as Laura Gonzales (2022) has explained, translation does not happen as research takes place, but “is often segmented or ignored while emphasis is placed on the ‘real’ work of the project—as something that can either be taken care of by a single individual (i.e., a translator or interpreter) or be done after the project is completed” (p. 44). As a result, none of the translated materials produced nor the pharmaceutical representatives deployed to persuade these families to switch their medications could answer their questions adequately in plain language. While there is of course much merit to this concern, it is important to remember that regardless of the primary language spoken in nations where researchers develop these drugs and carry out medical breakthroughs, most scientific information will still be conveyed in English because since the mid-20th century English has become the unofficial lingua franca of science.
According to historian Michael Gordin (2015), until fairly recently, the language of science has always been polyglot; by the 18th century, Latin had become a common language of science, but this circumstance was largely due to the fact that nobody owned the language or spoke it in their native countries (“a fitting vehicle for [scientific] claims about universal nature” (n.p.)) and even then, scientists would switch between Latin, their native tongues, and perhaps English or French, which were also largely ubiquitous in scientific scholarship. Indeed, Gordin (2015) writes that:
Across Europe, scholars began to use a mélange of tongues, and translations into Latin and French flourished to enable communication. By the end of the 18th century, works in chemistry, physics, physiology and botany appeared increasingly in English, French and German, but also in Italian, Dutch, Swedish, Danish and other languages. Until the first third of the 19th century, many learned elites still opted for Latin. (n.p.)
That all seemed to change with the rise of industrialization and the need for efficiency in seemingly all aspects of life—including scientific communication. The outbreak of the two world wars in the early to mid-20th century put an end to the idea of scientific multilingualism and eventually consolidated scientific knowledge around research written in English. While many have argued that keeping scientific discourse centered primarily on a single language (which just happens to be English) should be kept in place to bolster collaboration and productivity across various linguistically diverse nations, such an approach has only shifted the inefficiency of time lost to learning multiple languages toward budding scientists from non-English speaking countries (Gordin, 2015). These developments help to explain the lack of attention to languages other than English and the growing need for localization of health and medical products across international borders (Agboka, 2013).
Even when there are global movements intended to address health concerns that span national and linguistic borders, the prominence of English has the potential to derail equal participation. Consider, as one instance, the recent World Health Organization (WHO) Assembly vote adopting the Resolution on Rare Diseases in 2025 which seemingly helps to expand the number of countries contributing to research on rare disease, and thus, bring in more linguistically and culturally diverse perspectives to these conversations. The resolution, EB156(15), acknowledges that 300 million people globally are living with one (or more) of the 7,000 known rare diseases (WHO, 2025, p. 1) and authorizes the creation of a Global Action Plan (GAP), bringing much needed visibility to individuals living with a rare disease across international borders. The WHO uses GAPs to convert consensus of a World Health Assembly resolution into coordinated expectations and implementation blueprints, which shape actions such as patient treatment and diagnosis, disease funding for research, and insurance coverage. For example, in their midpoint evaluation of their Global Action Plan for Healthy Lives and Well-being for All, the WHO (2023) touted the achievement of several goals, such as:
EB156(15) contains similar language and goals, with the WHO calling for member nations to “strengthen cooperation at the national, regional, and international levels to promote equitable and timely access to affordable, safe, effective and quality medicines for all persons living with a rare disease across the world” (2025, p. 7) and create a 10-year GAP that will, in part, integrate rare diseases “into national health planning by developing and implementing national policies … aimed at preventing and improving healthcare services for persons living with a rare disease” (2025, p. 5). As can be ascertained, most GAPs seek to spur medical and health initiatives centered on a primary issue at the local and regional levels while encouraging nations to coordinate their efforts to achieve the goals that have been set forth.
Certainly, several rare disease advocacy organizations have lauded the passage of resolution 156(15) as welcome news (e.g., Fragile × International, 2025; IRDiRC, 2025). For example, Rare Disease International commented that “This Resolution presents a historic opportunity to integrate rare diseases into national health systems, ensuring visibility, care, and protection for the over 300 million persons living with a rare disease and their families (n.p.);” similarly, the International Federation of Pharmaceutical Manufacturers and Associations (IFPMA)1 (2025), called the resolution a “pivotal step in accelerating action for rare diseases” as well as a signal of “growing commitment to address the unmet needs of this diverse and underserved community” (n.p.).
However, other nonprofit organizations, such as Spain’s Salud por Derecho (Right to Health) (2025), have noted several barriers to enacting the equitable directives that the WHO proposes.2 Top of mind for the organization is the involvement of various pharmaceutical interests and entities (such as the IFPMA and the European Federation of Pharmaceutical Industries and Associations) in this worldwide initiative and urges their removal due to concern that they would pursue their own financial interests rather than those of individuals living with rare disease, and thus creating more barriers to care, rather than facilitate the type of access that Resolution 156(15) seeks.
While Salud por Derecho does note that there is potential for low- and middle-income countries to be left out of any new breakthrough pharmaceutical treatments that are developed during the decade (and beyond), no mention is made of countries that have historically been and continue to be left out of the hegemonic English language regime within the sciences. That is, despite rhetoric emphasizing global participation and collaboration to tackle these pernicious rare diseases, we must remember that access to English will still play a huge role in the extent to which nations are able to take part in researching treatments locally. There are, of course, various agencies and foundations that support research projects from countries with economic outputs too low to sustain their own research agendas. For example, even the National Institutes of Health (NIH) based in the United States accepts proposals from foreign and international applicants for certain grant opportunities.
However, written English is often either overtly required for proposals and progress reports connected to funding opportunities or tacitly given preference when funders decide which global health projects to fund, even when morbidity rates are similar in non-English speaking countries (Allison et al., 2025). Additionally, several studies have noted that journals continue to also privilege research written in English (Hommes et al., 2021; Rasmussen & Montgomery, 2018) which both reifies English as the lingua franca of science and also makes it difficult for researchers who do not speak English to secure funding if part of the application requires that they submit published articles in English. As Lauren Allison and colleagues (2025) note, “The limited research in non-English languages reflects systemic inequalities in global health” given that “this language barrier hampers knowledge translation and dissemination, limits learning opportunities, slows implementation of evidence-based practices,” (p. 2) and delays progress on truly combating health issues globally.
Many medical and health successes have been yielded via these GAPs, such as those brought about by the Global Action Plan on Antimicrobial resistance, which launched in 2015 (WHO, 2024). At the same time, certain initiatives have struggled and needed to be sunset before their target end date. The aforementioned GAP, Healthy Lives and Well-being for All, which launched in 2019, aimed to streamline the strategies and priorities that global health agencies issued by encouraging more communication with one another to avoid duplicative or competing messaging being disseminated (WHO, 2024). Even though the GAP was initially set to run through 2030, an independent evaluation at the halfway point (2024), noted that, in part, a lack of shared conceptual coherence hindered the level of coordination and ownership for this action plan; thus, the decision to sunset it in 2025 was reached.
It is too early to foresee how resolution 156(15)’s GAP will be received and supported across various locales; however, if it is to succeed, it will depend on the various rare disease advocacy groups already in place to help steer these conversations on a local and global scale. With that, we may come closer to seeing more research on rare disease come from various parts of the world that can speak to various non-English speaking constituencies.
In this issue we feature three articles, Jo Hsu’s opening keynote address from the 2025 Rhetoric of Health and Medicine Symposium, and three book reviews. In our first article, “What to Expect When You’re Not Expecting: Pregnancy, Miscarriage, and Constructing Risk at Advanced Maternal Age,” Melissa L. Carrion examines the language that circulates around pregnancy and miscarriage such as “advanced maternal age,” “blighted ovum,” and “expectant management” particularly as it relates to older mothers. Using rhetorical and autoethnographic methods, Carrion finds that such terms act in ways that both constructs and reifies risk for women and also “clearly demarcate the limitations of medical care.” Importantly, these terms, she argues, signal neoliberal priorities casting pregnant women as responsible for the outcomes of their pregnancies and outcomes.
In “To Recover is to Relearn: Techne and Eating Disorder Recovery,” Molly McConnell applies the rhetorical concept of techne “as a set of contextual practices and skills that become instinctual over time,” to highlight how specific actions taken up by individuals in recovery from experiencing eating disorders are learned skills that require repeated engagement before they can be naturally incorporated into one’s embodied knowledge. McConnell analyzes posts from the subreddit r/fuckeatingdisorders and her own personal story to elaborate on how recovery relies on the development of a techne focused on learning and relearning mind-body connections. That said, this discussion of techne may be useful as a frame for other kinds of discourses and practices centered on recovery.
Rounding out our articles, in “Psyche or Soma? An Analysis of the Medical Debates over the Diagnosis and Treatment Of ‘Transsexualism,’” Samantha J. Rippetoe adds to the field’s interest in history of the medicalization of transsexuality by revisiting the debates over the treatment of transsexualism in the United States from the mid 20th century. Specifically, Rippetoe analyzes medical experts’ arguments based on psyche and soma frameworks to make sense of trans patients’ desire to transition, noting that each relegated medical care to the realm of respective specialists. By linking stasis theory with the concept of association, Rippetoe shows how this “association between the origin point and treatment of transsexuality limited the possibilities to innovate trans medical care” and impeded medical experts’ ability to justify gender affirming surgery as a viable treatment for trans patients. In short, despite the availability of medical technologies that would allow trans patients to transition and align their bodies to their gender identity, their access to gender affirming care depended on “where medical professionals stood on the psyche/soma divide in regards to the origin of transsexualism (informed by their training as physicians of the mind or of the body).” Rippetoe ends her article by showing how there continue to be implications of such stasis points throughout contemporary legal proceedings involving trans care medical practices.
We are also fortunate to have the privilege of publishing V. Jo Hsu’s opening keynote address from the 2025 Rhetoric of Health and Medicine Symposium held in Minneapolis, MN. In “Diagnosing Fraud: Lyric Theory and Genres of Believability,” Hsu urges rhetoricians to take note of the importance of storytelling in the face of the numerous historical (and ongoing) injustices being perpetrated on marginalized peoples across various governmental, medical, and educational institutions. As they posit, “What does RHM bring to the study of health and medicine if not more imaginative ways of understanding how truths and lies are both constructed—in the collisions between individual and institution, between experience and authority?” Readers will find the threads that Hsu weaves together—set against their experiences seeking ketamine treatment for myalgic encephalomyelitis (ME/CFS) and engaging the PHQ-9 depression assessment tool—to offer a timely examination of the kinds of institutional, cross-sector work rhetoricians and health researchers must confront.
Lastly, we include three book reviews (published online: https://medical rhetoric.com/vol-9-issue-2/) in this issue. Justice Wilder Burry reviews Erin J Rand’s Minor Troubles: Racial Figurations of Youth Sexuality and Childhood’s Queerness, which closely examines the rhetorical construction of what Rand refers to as the “figural child.” Wilder Burry notes that such a construct (“an imagined, innocent, often white figure”) is often deployed in public discourses aimed at enforcing white, heteronormative norms as part of the ongoing entanglement between health policy and the politics of childhood. In her review of Lillian Campbell’s Patient Sense: Rhetorical Body Work in the Age of Technology, Maggie Hart lauds the text’s attention to the connection between embodied knowledges and emerging technologies. As Campbell’s ethnographic study examines how “physical, emotional, and discursive practices shift and adapt in technologically mediated contexts of care” across three sites of health professionals, Hart finds Campbell’s text to be of value to researchers studying “invested in understanding and preserving the human dimensions of care in an increasingly technologized healthcare landscape.” Capping our issue, Clare Frances Kennedy reviews Shui-yin Sharon Yam and Natalie Fixmer-Oraiz’s Doing Gender Justice: Queering Reproduction, Kin, and Care, a text that explores how health activists and care workers can utilize reproductive justice to combat anti-trans legislation and attacks on bodily autonomy. Because of its rich theoretical framing, which borrows and expands on engagements with decoloniality and Black feminist thought, Kennedy considers the text to be a “crucial volume for rhetoricians of health and medicine and healthcare providers invested in disrupting cisgender white heteronormativity and its colonial underpinnings.”
References
Agboka, Godwin Y. (2013). Participatory localization: A social justice approach to navigating unenfranchised/disenfranchised cultural sites. Technical Communication Quarterly, 22(1), 28–49. https://doi.org/10.1080/10572252.2013.730966
Allison, Lauren E., Ruysen, Harriet, Sánchez Alva, María J., Agravet, Priyesh, Loucaides, Eva M., Kumar, Meghan Bruce, 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 × International. (2025, May 26). #Resolution4Rare— A landmark resolution. https://fraxi.org/resolution4rare/
Gonzales, Laura. (2022). Designing multilingual experiences in technical communication. Utah State University Press.
Gordin, Michael D. (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. https://aeon.co/essays/how-did-science-come-to-speak-only-english
Hommes, Franziska, Monzó, Helena Brazal, Ferrand, Rashida Abbas, Harris, Meggan, Hirsch, Lioba A., Besson, Emilie Koum, Manton, John, Togun, Toyin, & Roy, Robindra Basu. (2021). The words we choose matter: recognising the importance of language in decolonising global health. Lancet, 9(7), e897–e898. https://doi.org/10.1016/s2214-109x(21)00197-2
IFPMA. (n.d.). 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. (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. (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. https://www.rarediseasesinternational.org/wp-content/uploads/2025/05/WHA78-Individual-Statement_v2.pdf
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, May 3). 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 4). Rare diseases: A global health priority for equity and inclusion. https://apps.who.int/gb/ebwha/pdf_files/EB156 /B156_CONF2-en.pdf
World Health Organization. (2024, May 22). Frequently asked questions. 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. https://www.who.int/news-room/feature-stories/detail/donors-making-a-difference--combating-antimicrobial-resistance
1 According to their About Us page, IFPMA (n.d.) “represents the innovative pharmaceutical industry at the international level and in official relations with the United Nations” by “work[ing] closely with all public health stakeholders in the UN system, including the World Health Organization, World Intellectual Property Organization, and the World Trade Organization” (n.p.) along with other governmental and non-governmental health organizations and research institutions. They seek to “champion pharmaceutical innovation and drive policy that supports the research, development, and delivery of health technologies.… as a trusted partner, bringing our members’ expertise to create sustainable solutions that advance global health” (n.p.).
2 Some of these concerns are based on the lack of a consistent definition of the problem. In essence, there is no one global definition of what constitutes a “rare disease,” leaving different nations to develop and rely on their own classification systems.