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Community Engagement

People living with rare disease are the reason we exist

It takes a village

The rare disease community is vital to the discovery of new treatments.

We value direct conversation and engagement with people and groups from around the world, and their shared voice helps steer our drug discovery and development programmes.

Vector

We continue to be a part of the rare disease community and work closely with patient groups on all of our disease projects, provide new resources for them, and support our colleagues who have a rare disease or care for family members with one.

Dr Bruce Bloom
Chief Collaboration Officer, Healx

You are the experts

We are always eager to increase our patient group collaborations for the diseases we're working on. Alongside our work with various patient organisations on treatment development projects, we engage and support rare disease groups and their families through events, webinars and other educational content.

Advocating for the rare disease community is one of our core values and we encourage our team to take volunteering days to help out with rare disease charities and projects.

Resources

All
Webinars
Educational
Rare Disease Champions
Educational
Fragile X infographic
michelle.harrison@healx.io
Educational
Prediction to patient
hello@douglassdigital.com
Webinars
Mission: Cure webinar on how your genes affect the medications you take
michelle.harrison@healx.io
Rare Disease Champions
Dr Anthony Hall and Nick Sireau awarded Points of Light award for having founded Findacure
michelle.harrison@healx.io
Educational
FAST 2020 Educational Summit: information to improve the quality of life for people with Angelman syndrome
michelle.harrison@healx.io
Webinars
Webinar | Digital Endpoints: Implementing Innovative Technologies to Improve Clinical Trials for Rare Diseases
michelle.harrison@healx.io
Webinars
Webinar | How to Develop In Vitro Models for Rare Disease Research
michelle.harrison@healx.io
Webinars
Webinar | How to Develop In Vivo Models for Rare Disease Research
michelle.harrison@healx.io
Rare Disease Champions
Chris Brannigan walks 1,200 miles barefoot in an effort to raise funds for the creation of a gene therapy treatment that could help patients battling Cornelia de Lange Syndrome (CdLS )
Patrick White
Webinars
Webinar | Measuring Quality of Life
Patrick White
Webinars
Webinar | Social Listening: Utilising Real-World Data From Patient Community Conversations to Accelerate the Development of New Therapies
michelle.harrison@healx.io
Webinars
Webinar | The Diagnostic Odyssey: Perspectives and Key Learnings from Patient Organisations and Industry
michelle.harrison@healx.io
Rare Disease Champions
Amber Freed raises millions to fund a gene therapy treatment for her young son before he develops a debilitating form of epilepsy
michelle.harrison@healx.io
Webinars
Webinar | The Evolving Development of Outcome Measures to Facilitate Clinical Trials for Rare Diseases
michelle.harrison@healx.io
Webinars
Webinar | The Rare Treatment Accelerator: Feedback for Applicants
michelle.harrison@healx.io

Some of our partners

Vector Dr Allyson Berent

Healx’s use of cutting-edge AI, combined with our scientific team’s expertise in cell lines and animal models, makes this innovative program incredibly promising - creating a unique opportunity to quickly bring therapies from bench to clinic.

Dr Allyson Berent
Chief Science Officer, Foundation for Angelman Therapeutics (FAST)
Vector Tess Harris

We are delighted to be collaborating with Healx in this pioneering partnership which has the potential to accelerate the development of much-needed treatments for both forms of PKD.

Tess Harris
CEO, PKD Charity
Vector Dr Mike Tranfaglia

The Healx partnership has been nothing short of amazing. In less than two years together, we were able to deliver decades-worth of drug discovery, and now we’re taking those discoveries to the clinic.

Dr Mike Tranfaglia
Chief Scientific Officer and Co-Founder, FRAXA Research Foundation
Vector Megan Golden

We are excited to move the needle forward for pancreatitis patients with the help of Healx. Their AI-powered drug repurposing model gives pancreatitis patients hope that they will see an effective treatment for their disease in the next five years.

Megan Golden
CEO, Mission: Cure
Vector Annette Bakker, PhD

We at Children’s Tumor Foundation (CTF) are very excited about this partnership. It is very encouraging that Healx is committed to developing innovative treatments for NF patients in collaboration with CTF.

Annette Bakker, PhD
President, Children’s Tumor Foundation
Vector Kate Adcock, PhD

It’s an exciting time for research into muscle-wasting conditions, and treatments are on the horizon. By working with world-leading partners like Healx, we can drive vital research forward and accelerate access to treatments.

Kate Adcock, PhD
Director of Research and Innovation, Muscular Dystrophy UK (MDUK)
Vector Rick Thompson, PhD

Healx combines a deep knowledge of drug repurposing with a passionate desire to deliver real change to rare disease patients.

Rick Thompson, PhD
CEO, Findacure

Community support projects

Over the last few years, we have been proud to support and fund a number of patient groups and, in line with our commitment to transparency, we have disclosed details of that support below.

Connect with us