<p>56.76% of respondents reported that they are related to someone with CF, while 43.24% stated they are affected by CF themselves. This likely reflects the fact that many parents completed the survey on behalf of their children, as CF is typically diagnosed at a young age. The high involvement of parents underscores how the disease impacts not just the patients themselves but also their families, who are deeply involved in the day-to-day management of CF. This highlights the importance of considering both the perspectives of young patients and their families when discussing gene therapy and CF treatments, as parents often play a critical role in decision-making regarding new treatment options.</p>
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<p>82.89% of respondents have heard of cystic fibrosis, while 17.11% had not. The high level of awareness about CF suggests that the general public is relatively informed about the condition, possibly due to the visibility of the disease through media, health campaigns, or personal connections to affected individuals. However, the 17% unfamiliar with CF indicates that further outreach is necessary, particularly focusing on this demographic to spread knowledge about the disease and potential treatments, including gene therapy. </p>
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<p>The majority of respondents (44.17%) learned about CF through media channels, such as television, news, or the internet. Other significant sources of information include family and friends (25.15%), as well as educational institutions (20.86%). Interestingly, only 3.68% of respondents learned about CF from healthcare providers, suggesting that the disease is more commonly understood through external sources rather than direct medical education. This reliance on media and personal connections highlights the importance of accurate and accessible information in the public domain, especially when considering the introduction of gene therapy as a treatment option. </p>
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<p>26.23% of respondents indicated that CF was diagnosed either through newborn screening or between the ages of 1 and 10. Another 21.86% reported diagnosis a few months after birth, and 18.03% were diagnosed about one week after birth. This highlights the early detection of CF, often requiring lifelong management, which can be emotionally challenging for families. Early diagnosis increases the appeal of treatments like gene therapy, which could offer long-term benefits with fewer interventions.</p>
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<p>42.16% of respondents rated the impact of cystic fibrosis on daily life as a 3 out of 5, indicating a moderate effect. Additionally, 32.97% rated the impact as a 2, while 12.43% rated it as a 4. Only 4.32% of respondents felt that CF had a very strong impact (rating it a 5), and 8.11% rated it a 1, suggesting little to no daily effect. These results indicate that for many patients and families, CF has a notable but varied impact on daily life, reinforcing the importance of treatments like gene therapy that could alleviate the burden. </p>
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<p>This chart shows that 23.19% of respondents identified abdominal pain as the most frequent symptom, followed by chronic cough (18.95%) and frequent lung infections (13.72%). Interestingly, symptoms like muscle weakness (2%) and delayed growth (6.23%) were less commonly reported. The emphasis on chronic respiratory and gastrointestinal symptoms aligns with CF being a metabolic disease affecting the whole body like experts such as Dr. Olariu explained to us, reinforcing the need for comprehensive treatments like gene therapy that target multiple aspects of the disease at the cellular level.</p>
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<p>The most common therapies used by respondents included medication (29.20%), physiotherapy (26.32%), and inhalation therapy (26.63%). These treatments are prominently represented in CF care, but they also reflect a burdensome regimen that requires constant management. The frequency with which patients must undergo these treatments may increase their interest in gene therapy, which could offer a less demanding option with potentially longer-lasting results</p>
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<p>The survey reveals that 36.79% of respondents identified emotional stress as the most stressful aspect of cystic fibrosis, closely followed by physical symptoms at 32.78%. Social restrictions were noted by 17.73% of respondents, and financial burden was a concern for 11.37%. Only 1.34% cited other factors. These results show that emotional and physical challenges dominate the stressors for patients and families, highlighting the need for treatments like gene therapy that could reduce both the physical and emotional burdens of managing CF. </p>
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<p>Among this group, 76.76% of respondents had heard of gene therapy, which is a higher awareness rate than seen in the general public survey. However, 23.24% remain unfamiliar with it, pointing to a need for further education. The higher familiarity here could be attributed to the fact that patients and their families are more engaged with medical advancements due to the severe nature of CF. </p>
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<p>When asked about gene therapy, 67.58% of respondents indicated familiarity with the concept, while 32.42% had not heard of it. This demonstrates a moderate level of awareness, but it is clear that a third of the population remains unaware of gene therapy. This gap in knowledge represents a significant opportunity for educational efforts, as the lack of familiarity could impact the acceptance and support for gene therapy as a viable treatment option for CF. The comments suggest that many see gene therapy as an emerging field, but there is some confusion regarding its practical applications.</p>
