Rare & Orphan Diseases: Specialist Homecare Services

Our Expertise

At HealthNet, we have over 30 years of experience working with leading clinicians and global pharmaceutical partners to design and deliver industry-leading programmes for rare and orphan diseases.

These conditions often require complex treatments and come with significant unmet needs - and we’re committed to supporting patients and healthcare teams every step of the way.

What Are Rare and Orphan Diseases?

  • Rare Disease: A condition affecting fewer than 1 in 2,000 people.

  • Orphan Disease: Often used interchangeably with rare disease but highlights the lack of resources and policy priority for research and treatment.

Each rare condition affects only a small number of people individually, but when you add up all the rare conditions together, they impact a large number of people collectively.

A single rare disease may affect only 1 in 10,000 people. But with more than 7,000 rare diseases identified, their collective impact is far-reaching, affecting around 3.5 million people in the UK and over 300 million worldwide. This is why, despite each condition being uncommon on its own, rare diseases represent a major public health challenge.

What We Offer

HealthNet Homecare’s Rare and Orphan Disease Strategy is designed to deliver compassionate, personalised, and clinically robust support to patients living with rare and Orphan conditions

Recognising the complexity of these conditions, HealthNet provides:

  • Direct-to-patient medication delivery

  • Specialist nurse-led training and administration

  • Dynamic, tailored consultations to support adherence

  • Patient support programmes to improve quality of life and empower patients to manage their conditions and treatment confidently at home. Real World Evidence (RWE) collection to inform treatment pathways and improve care standards

A Collaborative Approach

Rare disease impacts all aspects of life. People live with serious, chronic and complex conditions. Due to this patient’s need a range of support from differing HCPs to have holistic care

HealthNet work as an extension to support patients and families receive high quality holistic care according to their needs.

Our goal: safe, uninterrupted access to life-changing medicines.

Tailored Support Programmes

  • Configurable clinical platform for flexible scheduling, training, and support

  • Individualised adherence programmes proven to improve long-term compliance

  • Nurse-led care delivered by experienced specially trained nurses who understand the needs of patients with rare diseases and the difficulties they face daily.

Real World Data

We capture anonymised RWE to:

  • Understand disease progression

  • Demonstrate treatment effectiveness

  • Support continuous improvement in patient care

Access to Market

From early access supply to full commercialisation, we help develop pathways for rare disease medicines - leveraging regulatory expertise and market knowledge.

Why Partner with HealthNet?

  • One of the UK’s largest clinical homecare providers

  • Over 240,000 patients supported

  • Proven track record in rare and complex therapies

  • Fully compliant with NHS and regulatory standards

Want to learn more about our Rare & Orphan services?

Email: client.services@healthnethomecare.co.uk

Or visit our Contact Us page

Clair Salt-Vowles

Clinical Team Manager

"As the Rare, Orphan and Complex Commercial Account Manager, my role focuses on developing and delivering our therapy programmes for rare and complex conditions.

Clinical homecare truly transforms the patient experience. It reduces the disruption to everyday life and takes away the physical and emotional strain of repeated hospital visits.

It also enables earlier access to treatment at times when NHS services are under pressure, and it brings specialist nurses directly into the home - professionals who understand complex therapies and help build real trust with patients.

Ultimately, clinical homecare matters because it delivers safe, specialist treatment right to where patients live. It eases the burden on families, strengthens care pathways, and ensures timely access to the therapies people rely on to maintain their quality of life.”