To infinity and beyond

How the way we work creates a better world for people with a rare disease

Published 11 August 2021

More than 300 million people are affected by a rare disease worldwide1, but the community remains vastly underserved. Often, rare diseases are under-researched and misunderstood.

There is a need to change the way we work with the global rare conditions community. Whether it is partnering with patient groups, doctors, governments and other companies, we have to move faster, be bolder and take steps to do something different. In the rare conditions world, being unconventional leads to infinite possibilities for solutions and better lives for patients and their families.

We call our operational model Infinity, and it allows us to do this better. Our Rare Conditions Partners (RCPs) around the world work closely with patients, families and communities they are embedded in. These relationships provide us with a 360-degree view of what it is like to live with a rare condition, deepening our understanding of complex patient journeys and their communities’ broader needs. It is through these partnerships and ongoing dialogue that enable us to build a better life for our patients and everyone in the wider healthcare ecosystem.

  1. EURORDIS. Rare Disease Europe. ‘How has COVID-19 impacted people with rare diseases?’ November 2020.

Read more to see Infinity in action

Woman being delivered boxes at the door

“If we can deliver pizzas to homes, then why can’t we do the same for patients’ treatments?”

COVID-19 changed our lives on every level and while its disruption of healthcare systems worldwide was a huge challenge, it opened the door to rapid digital transformation. Roche had to innovate at unprecedented speed to give patients with rare conditions uninterrupted access to treatment. This is how Integrated Delivery to Patients (ID2P) was born.

Read more

Child holding parents’ hand

Starting a spinal muscular atrophy (SMA) community

RCP Ahmed, pushed boundaries to support a family suffering with SMA. After creating a group on a messaging platform, he kickstarted a grassroots SMA community, connecting people around new ways to make a difference for their loved ones.

Read more

Patient and healthcare provider looking at digital health tools

Improving care in Huntington’s disease (HD)

RCPs Nathalie and Marinela supported patients living with HD in the Caribbean. Through teamwork and collaboration, they provided Trinidad with resources, training and materials needed to treat HD.

Read more

Child looking outside the window

Networking to reinvent solutions for spinal muscular atrophy (SMA) patients

RCPs in France and Canada collaborated to facilitate learnings and capabilities of using repurposed medical equipment from the 1960s to support spinal development of children living with SMA today.

Read more

Anne Nijs, Transformation Lead Rare Conditions at Roche

“Rare Conditions Partners across the globe have been building a community with our internal and external peers, all connecting and partnering together, to co-create opportunities and continually shift and solve problems for our patients — and all patients — around the world.”

Anne Nijs, Transformation Lead Rare Conditions at Roche

Tags: Society, Patients,