Sciensus and Rare Patient Voice spotlight rare disease access burden in Europe with ISPOR 2026 poster

LONDON, UNITED KINGDOM, May 20, 2026 /EINPresswire.com/ -- Sciensus, a leading European life sciences organisation focused on accelerating patients' access to lifesaving medicines, and Rare Patient Voice, now part of Konovo, announced the presentation of new data today at ISPOR 2026 highlighting the treatment access burden faced by people living with rare diseases and their caregivers across Europe. The poster, Surveying treatment access and support for rare diseases in Europe: A Quantitative Cross-Country and Patient–Caregiver Comparative Analysis, reports findings from a cross-sectional survey of 217 eligible respondents across the UK, France, Germany, Italy and Spain, statistically comparing outcomes between patients and caregivers and identifying statistical differences in key access indicators.

The study found that access is manageable for many patients, but a meaningful minority still face recurring logistical and emotional burden. Across the sample, 50% reported no access to home delivery or said they were unaware of it, 28% spent more than one hour collecting treatment and respondents with home delivery reported significantly better wellbeing than those without it.

Home delivery access varied significantly by country, with the highest levels of unmet need reported in Italy and Spain, while caregivers were more likely than patients to lack access or awareness and spent longer collecting medicines. The poster also found that financial burden increased with collection time, reinforcing the potential importance of patient-centred service design, and adaptive support models which may lead to better access pathways for rare disease communities.

“Too often, the practical realities of accessing treatment remain under-recognised in rare disease care,” said Dr Sherif Raouf, Clinical Director, Cancer, Sciensus. “This analysis shows that when access is harder, the burden on patients and caregivers rises quickly. The findings are especially relevant because they quantify how logistics, awareness and support services can materially shape the lived treatment experience, and they point to clear opportunities to improve care through more patient-centred delivery models.”

Julie Gosper, Managing Director, Rare & Specialty, Sciensus, said: “This project demonstrates the capability of Sciensus to amplify the patient voice and lived experience. With our legacy of patient-centred delivery of complex therapies and our ability to support biopharma partners in reaching patients across Europe, we are well positioned to help translate this kind of evidence into practical service improvements for rare disease communities that will benefit access.”

Pam Cusick, Senior Vice President, Rare Patient Voice, said: "These findings highlight significant challenges facing patients and families across Europe. Clinician unfamiliarity may contribute to delays in diagnosis and treatment, while ongoing supply chain disruptions continue to affect reliable access to care. The results also point to substantial psychological burden, caregiver strain and geographic disparities in access to specialists. Together, these insights underscore the need for greater awareness, stronger care coordination and more comprehensive support for rare disease patients and caregivers".

The poster concludes that expanding home delivery, improving clinician education, strengthening psychological support and reducing supply disruption should be considered key priorities for stakeholders involved in orphan drug launch planning, early access programme design and patient support services.

About Rare Patient Voice, a Konovo company
Rare Patient Voice connects patients and family caregivers with research opportunities so their experiences can help improve medical products and services.

About Sciensus
Sciensus is a life sciences organisation specialising in patient access, clinical services and insight solutions. The company supports patients with complex and chronic conditions through homecare services, digital tools, distribution and real-world evidence capabilities, partnering with healthcare providers and pharmaceutical companies across the UK and Europe.

For more information, visit www.sciensus.com.

Danielle Whitney
Sciensus
marketing@sciensus.com
Visit us on social media:
LinkedIn

Legal Disclaimer:

EIN Presswire provides this news content "as is" without warranty of any kind. We do not accept any responsibility or liability for the accuracy, content, images, videos, licenses, completeness, legality, or reliability of the information contained in this article. If you have any complaints or copyright issues related to this article, kindly contact the author above.