Healx Logo

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
Angelman syndrome infographic
hello@douglassdigital.com
Rare Disease Champions
Bruce Bloom, our Chief Collaborations Officer, joins the Rare Disease Company Coalition leadership team
hello@douglassdigital.com
Educational
Fragile X infographic
hello@douglassdigital.com
Educational
Prediction to Patient
hello@douglassdigital.com
Webinars
Mission: Cure webinar on how your genes affect the medications you take
hello@douglassdigital.com
Rare Disease Champions
Dr Anthony Hall and Nick Sireau awarded Points of Light award for having founded Findacure
hello@douglassdigital.com
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

Volunteer hub

Many of our team commit time outside of working at Healx to help the rare disease community. We welcome opportunities from patient organisations and charities and our volunteer network may be able to help!

Some of the ways they can help include:

volunteer_icon
Finding collaborators
volunteer_icon
Language translation
volunteer_icon
Helping with events
volunteer_icon
Website design and social media
volunteer_icon
And more!
volunteer_picture
Patrick White
Cambridge, UK
Marketing + Design
volunteer_picture
Clara Tang
Cambridge, UK
Graphic design + Project planning & strategy
volunteer_picture
Sofia Chalkiadaki
London, UK
Event co-ordination + Greek translation
volunteer_picture
Sonia Liggi
London, UK
Italian translation
volunteer_picture
Christa van Kan
Amsterdam, Netherlands
Clinical drug development consultation
volunteer_picture
Ivan Angulo-herrera
Cambridge, UK
Spanish translation + preclinical research strategy
volunteer_picture
Charlotte Chorley
Cambridge, UK
Copy-editing + Communication strategy
volunteer_picture
Alexie Shaw
March, UK
Event co-ordination + Grant funding support
volunteer_picture
Elena Cibrián Uhalte
Cambridge, UK
Spanish translation + Disease biology curation
volunteer_picture
Emily Boyce
London, UK
Event co-ordination + Collaborator discovery
volunteer_picture
Penelope Garmiri
Cambridge, UK
Greek translation + Data curation + Wikipedia editing
volunteer_picture
Steffi Suhr
Saffron Walden, UK
German translation
volunteer_picture
Elizabeth Coker
Saffron Walden, UK
Data and literature searches + Social media and blog creation
volunteer_picture
Grace Simmons
Cambridge, UK
Administration + Event & meeting planning
volunteer_picture
Mariavi Ruiz
Málaga, Spain
Grant application writing + Spanish and Swedish translation

    I need a volunteer!


    Terms & conditions

    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

    Some of our partners

    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