Amplifying Patient Voices to Transform Rare Disease Care

Turning Patient Voices Into Breakthrough Treatments

Making the Most of Now provides strategic thinking and operational delivery support to organisations advancing understanding of rare diseases and driving innovation in diagnosis and treatment.

We support and partner with research institutes, biopharmaceutical companies, healthcare providers, patient support groups and advocacy organisations to help create patient-centred solutions for rare diseases. We help improve outcomes for those affected by rare disease by enabling their voices to be at the centre of all aspects of the rare disease ecosystem from research to delivery of care.

Combining lived experience with strategic and operational management expertise, we offer a range of services from strategic and operational management consultancy to event management and communications management support. We are a catalyst for innovation and a connector of communities and ideas across the rare disease ecosystem

Our Difference

We combine authentic patient experience with proven senior executive leadership. Our Founder and driving force, Clive Phillips has managed teams of 50+ people and operations for 500+ staff organisations.

Clive is a former Board Director of the GBS|CIDP Foundation International, he serves as a Patient Representative on the NZ Blood Service Clinical Governance Board, and lives with Multifocal Motor Neuropathy (MMN) every day. This isn’t just professional expertise—it’s a personal mission backed by real operational capability.

Lets Transform Care Together

Project MMN

Transforming the lives of people affected by Multifocal Motor Neuropathy

A social enterprise, Making the Most of Now is dedicated to improving understanding of Multifocal Motor Neuropathy (MMN) and supporting those affected by it. MMN is a rare, incurable, neurological condition that causes muscle atrophy and loss of motor function.

With global healthcare leaders, Paralympic and Olympic athletes and award winning film makers we organise transformative cycling adventures, community events and share stories from them to increase understanding of MMN, to inspire the MMN community and improve well being in it.

Since 2022 our Ride for MMN events have raised nearly US$200,000 for MMN research.

To Learn More