Online communities
Global online communities for patients, families, caregivers, clinicians and researchers, enabling connections with others on a similar journey.
Why build an online community?
Sciensus partners with patient advocacy groups and research organisations to develop online communities aimed at fostering connections between individuals no matter where they live or what language they speak. These online platforms serve as safe spaces for people to share their personal experiences, health-related information and stories when living with their conditions. The primary goal is to connect patients worldwide, to support each other, and assist them in taking charge of their health.
Support and connection
Advocacy and awareness
Information sharing
Case study: Progeria Connect
In 2022, Sciensus partnered with the Progeria Research Foundation (PRF)– the primary, centralised non-profit organisation dedicated to discovering treatments and, ultimately, a cure for Progeria, an ultra-rare paediatric disease.
Together, the PRF and Sciensus created Progeria Connect, a new and exciting online platform providing a safe place for families, caregivers, clinicians, researchers, and children and young adults with Progeria to communicate without language barriers, and to access a variety of resources to support them along their health journey.
Platform features
- Multilingual and cross global capabilities, reducing barriers in connecting patients.
- Live Zoom video chat capability, including real-time translations for multi-language calls.
- A mobile app to engage with the community while on-the-go.
- Access to clinical trials, exclusive webinars hosted by the PRF, and the latest research findings.
- Private groups to share ideas and stories, including Adults with Progeria, Teens with Progeria, and Parents/Carers plus Consultants.
- Private messaging to other members of Progeria Connect.
It is a brilliant way of families supporting each other through a very different life. We also share helpful medical information and the chat is translated which is amazing because there are less than 150 people worldwide with progeria and now we can connect regardless of our language.
Sammy, from Italy, was diagnosed following his birth in 1995 and given a maximum of 13 years to live. At 27 he benefits from treatment and is now a scientist himself researching progeria and other rare diseases.
Progeria Connect’s success to date
The online community is constantly growing and will soon be available everywhere as additional languages are being added.
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