Instagram as an Educational Platform for Familial Mediterranean Fever: A 33-Month Experience

To the Editor:

Familial Mediterranean fever (FMF) is the most common monogenic autoinflammatory disease worldwide. Despite therapeutic advances with colchicine and biologic agents, patients with FMF face persistent challenges in accessing reliable educational resources in their native language. Health literacy gaps contribute to suboptimal disease management, nonadherence to treatment, and reduced quality of life. Social media platforms have emerged as powerful tools for health education and patient engagement, offering accessibility, interactivity, and community building.^1,2 We report the design, implementation, and 33-month outcomes of FMF Reference (@FMF.reference), the first Instagram account dedicated to providing evidence-based FMF education in French.³

Launched in April 2023, this platform aimed to address 5 educational priorities: (1) to create an accessible platform for FMF education; (2) to raise awareness about disease mechanisms and patient impact; (3) to disseminate evidence-based information on pathophysiology, genetics, treatment, pregnancy, fertility, and daily living; (4) to provide practical guidance on nutrition and physical activity; and (5) to foster community among patients with FMF through a user-friendly digital medium.

Content was developed by a multidisciplinary team of physicians and clinical research assistants specializing in autoinflammatory diseases at the French National Reference Center for Autoinflammatory Diseases and Inflammatory Amyloidosis (CEREMAIA). All posts underwent medical validation before publication. Interactive features included polls, quizzes, article summaries, and infographics (Figure). Metrics tracked follower demographics, post reach, engagement rates, and qualitative feedback.

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Figure.

Example of a translated publication about colchicine during pregnancy. FMF: familial Mediterranean fever.

In over 33 months, the account attracted 403 followers. Demographic analysis revealed that followers consisted of 283 (70%) women and 203 (50%) aged 25-44 years. This age distribution aligns with the period of peak disease activity and reproductive concerns in FMF.

Geographic distribution showed 323 (80%) of followers were based in France and 80 (20%) were from Belgium, Italy, and North African French-speaking countries (Morocco, Algeria, Tunisia). This cross-border reach reflects the epidemiology of FMF in Mediterranean populations and the need for educational resources beyond France.

We published 156 posts across 6 core themes:

• (1) Pathophysiology (n = 26): simplified explanations of autoinflammation, inflammasome activation, and interleukin (IL)-1β pathways

• (2) Genetics (n = 28): information on MEFV gene mutations, inheritance patterns, and carrier status implications for family planning

• (3) Treatment (n = 35): updates on colchicine therapy, emerging biologic treatments (anti–IL-1 agents), treatment adherence strategies, and side effect management

• (4) Pregnancy and fertility (n = 24): FMF management during pregnancy, medication safety, and fertility concerns in both men and women

• (5) Daily life (n = 27): practical tips for managing disease in professional, social, and family contexts; managing fatigue, travels, and work-life balance

• (6) Nutrition and physical activity (n = 16): evidence-based recommendations for overall health, antiinflammatory diets, and safe exercise.

Quantitative analysis revealed significant reach and engagement. Posts averaged 412 views (range 202-875) and 9.8 likes (range 1-31). Instagram Stories with interactive features (polls, quizzes) averaged 123 views with 28% participation rate, indicating an active audience. The theme that reached the most views, shares, and likes was colchicine (> 800).

Content format significantly influenced performance. Visual posts (images, infographics, videos) outperformed text-only posts (320 vs 180 average views, P < 0.001), highlighting patient preference for dynamic formats. Carousel posts allowing multislide storytelling achieved the highest engagement (mean views 487).

Four structured quizzes captured follower feedback in order to study patient-reported impact of the online publications (n = 112 total responses). Each quiz consisted of 1 question allowing 4 possible answers, and only 1 response per account was permitted. Key findings showed (1) content value: 94% found publications helpful; (2) priority topics: simple medical explanations (78%), patient testimonies (65%), and practical life tips (61%); (3) impact on isolation: 73% reported feeling less isolated; (4) disease self-management: 68% felt empowered to manage their condition. Qualitative comments emphasized appreciation for French-language content, medical accuracy, accessibility, and validation of patient experiences. Notable achievements included successful educational sessions addressing common FMF misconceptions and positive responses to pregnancy management guidance.

This initiative demonstrates the potential of Instagram as a scalable tool for patient education in rare diseases. The willingness of patients to access digital educational tools has been assessed in rheumatic diseases.⁴ However, most disease-specific Instagram accounts are run by patients and very few accounts are supervised by physicians. Success factors include evidence-based content adapted to health literacy levels, visual communication strategies, interactive features, and community building. Limitations include self-selection bias (digitally engaged patients), self-reported outcomes without validated instruments, and lack of formal knowledge retention assessment. The predominance of young women may reflect both FMF demographics and sex and gender differences in health information-seeking behavior but suggests underreach to male patients. Planned developments include multimedia content expansion (short educational videos, live Q&A sessions with specialists), formal surveys using validated instruments to assess the platform’s effect on disease knowledge and quality of life, collaboration with patient associations to cocreate content, and adaptation of successful formats to other rare autoinflammatory diseases (eg, cryopyrin-associated periodic syndrome, tumor necrosis factor receptor-associated periodic syndrome, mevalonate kinase deficiency). As most patients with FMF come from Mediterranean countries, translations to languages such as Arabic and Turkish could be valuable.

Our experience demonstrates that Instagram is an effective, accessible, and scalable complement to traditional patient education resources. Social media platforms can bridge healthcare gaps for rare disease populations, fostering informed, empowered, and connected patient communities. We encourage similar initiatives for other rare autoinflammatory conditions within the expanding educational ecosystem for patients.

• Copyright © 2026 by the Journal of Rheumatology