Catalysing Positive Action in the Rare Disease Ecosystem

Our Goals

Enhancing the quality of life of those affected by rare disease.

Inspiring and supporting the rare disease community to achieve the extraordinary.

Catalysing positive action and innovation across the rare disease ecosystem.

Maximising the impact of organisations supporting those affected by rare disease

About Us

We believe everyone affected by rare disease should be able to live to their full potential.

We provide the inspiration, insights, connections and support for those affected by rare disease and those supporting them to set and achieve goals beyond the boundaries of what they believe is possible.

We combine lived experience of rare disease with strategic and operational management expertise

We partner with partners global healthcare leaders, Paralympic athletes, and award-winning film makers to deliver inspiring and impactful products and services.

We support those affected by rare disease, research institutes, biopharmaceutical companies, government agencies, healthcare providers, patient support groups and advocacy organisations.

We help improve outcomes for those affected by rare disease by enabling their voices to be at the centre of the rare disease ecosystem from research to delivery of care.

Latest Updates

No One Rides Alone New Zealand Film Tour Tickets Now On Sale

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Our Founder

Combining authentic patient experience and proven senior executive leadership, our driving force, Clive Phillips has managed teams and operations in large organisations in dynamic and challenging environments across the globe.

Clive lives with Multifocal Motor Neuropathy (MMN) and 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.

Our History

Making the Most of Now began in 2021 as a project to improve awareness and understanding of MMN and support those affected by it. Since 2022 we have organised outdoor adventures, community events and shared stories that have inspired the MMN community, improved well being in it and raised US$200,000 for MMN research.

Recognising the power of inspiration to catalyse action that transforms the experience of the rare disease community, we have gradually expanded the scope of our work, to include all rare diseases, while remaining committed to our original goals of supporting the MMN community.

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