Rare, Orphan & Complex Therapy Services

Rare & Orphan Diseases: Specialist Homecare Services for High-Complexity Therapies

Supporting access, adherence, evidence generation, and differentiated patient experience.

Our Expertise

HealthNet has more than three decades of experience partnering with global pharmaceutical companies and specialist clinicians to design and deliver bespoke homecare programmes for rare and orphan conditions. These therapies often sit at the intersection of high cost, high complexity, and high unmet need - requiring robust, flexible, and patient-centred service models.

Our specialist infrastructure helps ensure patients receive safe, seamless access to lifechanging medicines while providing pharmaceutical partners with the confidence, data, and clinical integration needed to support long-term therapy success.

Understanding Rare & Orphan Diseases

Rare and orphan conditions impact small patient populations individually yet collectively represent a major health burden.

  • Rare disease: affects fewer than 1 in 2,000 people

  • Over 7,000 rare diseases identified, affecting ~3.5 million in the UK and 300+ million worldwide

For pharma partners, this means:

  • Highly specialised pathways

  • The need for reliable, scalable patient support

  • Stronger evidence requirements

  • A growing expectation for innovative, decentralised models of care

HealthNet’s homecare services are designed to help address all four.

Doctor and patient sitting on a sofa, looking at a tablet. The doctor is wearing a white coat and stethoscope, discussing medical information.
Doctor and patient sitting on a sofa, looking at a tablet. The doctor is wearing a white coat and stethoscope, discussing medical information.

What We Offer

Our Rare & Orphan Disease service model delivers personalised, clinically safe support that helps patients remain on therapy and gives pharmaceutical partners the confidence their medicines are reaching, supporting, and benefiting the right patients.

  • Specialist Direct-to-Patient Medicine DeliverySecure, temperature-controlled direct-to-patient medicine delivery, supported by a full audit trail for high-risk, high-value therapies.
  • Specialist Nurse-Led CareNurse-led care delivered in the home or virtually, providing administration or self-administration training with condition-aware support from nurses trained in rare disease pathways and flexible appointment options.
  • Adherence-Focused SupportAdherence-focused support through tailored education and coaching, dynamic follow-up consultations and programmes designed to strengthen adherence and persistence.
  • Real-World Evidence & Insight GenerationReal-world evidence and insight generation supporting treatment optimisation, HTA and market access evidence needs, post-launch value demonstration and ongoing pathway refinement.
Two people are shaking hands signifying an agreement or partnership.
Two people are shaking hands signifying an agreement or partnership.

A Collaborative Approach

Rare disease patients often require multidisciplinary input and continuity of care beyond traditional clinical settings.

HealthNet acts as an extension of clinical and pharmaceutical teams to deliver:

  • High-quality homebased care

  • Specialist nurse engagement

  • Consistent communication with NHS teams

  • Continuity across the entire treatment pathway

Our goal: safe, reliable access to therapy - without disruption.

Watch our PNH & Rare Disease film

Tailored Support Programmes

Our bespoke support pathways are built around the complexity of the therapy and the needs of each patient group.

  • Configurable scheduling, monitoring, and nurse support

  • Structured, personalised adherence programmes

  • Ongoing therapeutic education and coaching

  • Nurse-led care delivered by specialists who understand the emotional and practical realities of living with a rare disease

These programmes help improve long-term therapy engagement and reduce barriers that lead to treatment discontinuation.

Two hands gently hold each other, with one wearing a ring, symbolizing support and connection.
Two hands gently hold each other, with one wearing a ring, symbolizing support and connection.
Nurse in blue scrubs working at a desk with a computer in a medical office; clipboard and small bottle nearby.
Nurse in blue scrubs working at a desk with a computer in a medical office; clipboard and small bottle nearby.

Real-World Data & Insights

HealthNet captures anonymised real-world evidence to help pharmaceutical partners:

  • Understand treatment behaviour in the home environment

  • Identify adherence trends and challenges

  • Demonstrate therapy impact to clinicians and commissioners

  • Strengthen evidence for HTA submissions, renewals, and ongoing market access

Our data enhances visibility across the therapy lifecycle and supports continuous improvement.

Supporting Market Access & Pathway Development

From early access programmes to commercial launch and ongoing optimisation, HealthNet supports pharma teams in building robust, scalable homecare pathways that:

  • Enable faster access to treatment

  • Reduce pressure on specialist centres

  • Increase patient reach

  • Support therapy equity across regions

  • Provide the infrastructure needed for the long-term success of rare medicines

We ensure therapies are delivered safely, compliantly, and consistently - directly into the home.

A medical professional in blue scrubs and mask adjusts gloves in a hospital room, with medical equipment and beds visible in the background.
A medical professional in blue scrubs and mask adjusts gloves in a hospital room, with medical equipment and beds visible in the background.
Man and woman sitting on a couch; the woman, in a dark shirt, is smiling warmly at the man.
Man and woman sitting on a couch; the woman, in a dark shirt, is smiling warmly at the man.

Why Partner with HealthNet?

  • One of the UK’s largest clinical homecare providers

  • Over 240,000 patients supported

  • Deep expertise across rare, orphan, and complex therapy areas

  • Proven ability to deliver bespoke programmes at scale

  • Fully compliant with NHS and regulatory frameworks

  • Rated 4.8★ on Trustpilot

We deliver the clinical, digital, and logistical foundations required to successfully support rare and orphan therapies throughout their lifecycle.

Clair Salt-Vowles

Rare, Orphan and Complex Commercial Account Manager

“As the Rare, Orphan & Complex Commercial Account Manager, my role focuses on developing and delivering therapy programmes tailored to the needs of patients with highly complex conditions.

Clinical homecare transforms the patient journey - reducing disruption, supporting earlier access to treatment, and bringing specialist nurses into the home where trust and consistency can truly develop.

For pharma partners, it ensures safe, specialist-led treatment delivery, reinforces adherence, and strengthens the value story behind rare therapies.”

Elderly person in a grey sweater with a hand resting on their shoulder, showing comfort and support.
Elderly person in a grey sweater with a hand resting on their shoulder, showing comfort and support.