New European Survey of Rare Disease Patients Exposes Access Gaps and Urgent Need to Redesign Care Pathways

Listening to patients: Sciensus and Rare Patient Voice share new insights that reveal critical opportunity to improve care pathways

LONDON, UNITED KINGDOM, February 26, 2026 /EINPresswire.com/ -- A new survey of rare disease patients and caregivers across Europe reveals that treatment innovation is outpacing access, leaving many to shoulder significant logistical, financial and emotional burden simply to receive care. A collaboration between Sciensus and Rare Patient Voice, the research highlights systemic friction in treatment pathways and underscores the urgent need for care models that reduce travel, improve awareness of home-based options and bring treatment closer to patients’ lives.

“For people living with rare conditions, the burden of treatment extends far beyond the disease itself,” said Pam Cusick, Senior Vice President at Rare Patient Voice. “Travel time, uncertainty about available services and the cumulative impact on families are often under-recognised in system design. By co-developing this survey, we wanted to ensure that patient and caregiver experiences are not anecdotal but evidenced — and that they inform practical improvements in how care is delivered.”

The survey reveals a clear disconnect. While therapeutic innovation continues to advance, access pathways still create avoidable burden. The burden for patients and their caregivers is logistical, requiring days off and long travel distances, financial and emotional and has impact on health outcomes and quality of life. Beyond the patient and caregiver, the burden has ramifications for health systems with treatment delays, reduced adherence, increased administrative needs and avoidable clinical risk. Three key themes emerged:

- Access remains uneven. Geography and service design continue to create friction in treatment journeys.
- Awareness gaps persist. Many patients are unsure whether home delivery or in-home clinical support are available.
- Care closer to home can reduce burden. A majority believe home-based solutions would positively change their experience.

“These findings bring structured evidence to what many in the rare disease community already know,” said Julie Gosper, Managing Director, Rare and Specialty at Sciensus. “When nearly half of respondents describe travel as a meaningful burden and half are unaware of alternative care models, it signals a clear opportunity for collaboration. By aligning patients, clinicians and industry, we can redesign pathways that reduce friction and improve outcomes.”

Fielded in December 2025 across France, Germany, Italy, the UK and Spain, the survey included 217 rare disease patients and caregivers. Key findings include:
- 28 percent travel more than one hour for treatment, with 12 percent travelling two to four hours or more
- 49 percent describe medicine collection as a moderate or significant burden
- 50 percent are unsure whether home delivery is available
- Among the 50% unsure whether home delivery is available, 85% believe it would have a positive impact

To mark Rare Disease Day, Sciensus will host a webinar exploring the RPV survey findings and their implications for medical affairs, market access and patient support strategy.

Webinar details
Date: 27th of February 2026
Time: 3:30 pm - 4:30 pm
Registration: Sciensus hosts a Rare Disease Day 2026 webinar | Sciensus

A detailed survey study report analysing the findings will be available on the Sciensus website on 27 February.

About Sciensus
Sciensus is an integrated, end-to-end commercialisation partner simplifying access, engagement and evidence generation across Europe – combining human-led care with digitally enabled solutions to bring therapies to market faster and deliver better outcomes for all stakeholders. With over 30 years of experience, we support more than 300,000 patients annually across cancer, rare and chronic diseases.

Our offering includes compliant distribution, last-mile capabilities, in-home clinical care with complex drug administration, digital patient support and real-world evidence generation – supporting therapies from development through to full commercialisation.

By integrating European infrastructure, patient engagement and real‑world evidence in one connected platform, Sciensus helps turn everyday patient interactions into strategic insight, improved outcomes and sustained value.

Danielle Whitney
Sciensus
marketing@sciensus.com

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