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Rare Disease Support Networks Lack Accessibility for Non-English Speaking Patients.

Ethical Legal Social Issues (ELSI) Public Health and Policy
  • Primary Categories:
    • Health Care Inequities and health disparities
  • Secondary Categories:
    • Health Care Inequities and health disparities
Introduction:
Psychosocial support is an often cited benefit of genetic diagnosis. Following a diagnosis, patients and their families are frequently referred to support groups to aid in navigating healthcare and finding community. Yet, access to these support groups may be limited by language barriers, and outreach to minoritized populations is lacking. Rare disease collectively impacts 3.5 – 5.9% globally and 7-9% of the US population, and clinical genetics as a field is striving to remediate its Eurocentric bias. While there is new emphasis on greater ethnic diversity in human genetic research, the psychosocial aspect of culturally competent rare disease care is often overlooked.  

To improve inclusivity, it is critical to describe the current gaps in psychosocial support. The National Organization for Rare Disorders (NORD) serves as a hub for rare disease care in the US. Through their designated Centers of Excellence, NORD aims to improve access and quality of care, accelerate research, and train specialists. NORD also promotes a database of Member Patient Organizations for direct patient and family-targeted support. As the primary, consolidated resource for genetic disease, NORD and its promoted partner groups are the ideal focus for our initial review on language inclusivity in rare disease psychosocial support.

 

Methods:
We analyzed the websites of NORD, its Centers of Excellence for Rare Disease, and its Partner Support Groups to measure language-based inclusivity and community outreach efforts. We reviewed resources in alphabetical order to minimize any selection bias. Inclusivity was assessed through the website content. We looked for language accessibility, availability of translated materials, and evidence of targeted outreach to diverse or minoritized communities.

Results:
Of the 40 NORD Centers of Excellence, only 6 (15%) websites offered full translation beyond English: 2 (5%) in Spanish and 4 (10%) offering 12+ languages via Google Translate or official interpretation service. An additional 10 (25%) offered free language services, including one dedicated Spanish interpreter line and 9 (22.5%) supporting more than 15+ languages (2 including American Sign Language). Partial translation of domains such as financial assistance, intake forms, and appointment requests, were available on 3 (7.5%) sites, most commonly in Spanish, Arabic, and Chinese.

Among 44 NORD Member Patient Support Organization websites reviewed, 10 (22.7%) provided full website translation, primarily in Spanish (10, 22.7%), followed by French (8, 18.2%), Italian (7, 15.9%), and German (7, 15.9%). Another 7 (15.9%) organizations without translation services offered downloadable resources in Spanish, Arabic, French, Italian, German. Translated resources were predominantly educational materials such as patient guides explaining the diagnosis, symptoms, and treatment options, and emergency cards for patients to store in emergencies. 

Although most NORD member organizations emphasize the importance of support groups within their community, we found no support groups that offered webinars or sessions in a non-English language. We found only one group actively engaging with marginalized communities through community workshops, newly diagnosed kits, and aid programs which are all available in Spanish.

 

Conclusion:
Language discordance is a significant obstacle to accessing the resources of US-based family rare disease organizations. Even the current language offerings are insufficient – while some organizations offer translated websites, many resources are limited to English-only downloadable materials. Similarly, organizations with translated documents frequently have English-only websites, which lack accessibility to non-English-speaking patients. The lack of language diversity presents a significant systemic barrier for minoritized populations to gain support from likewise communities, limiting the psychosocial benefits of a genetic diagnosis.

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