Following a successful 2021, the Digital Experiences team at rareLife solutions marked two important milestones in February, including the rollout of an all-new onevoice community and the visual redesign of one of our longest running and largest onevoice sites.

The newest member of the onevoice family (and the first of several launching over the course of 2022) is oneSMAvoice, an education and community website focused on people impacted by spinal muscular atrophy (SMA). Stemming from a genetic disorder that causes the loss of the motor neurons that control muscle movement, SMA patients experience weakness and atrophy in the muscles used for movement. As new treatments for SMA reach the market or undergo clinical trials, we are excited to support patients, advocates, and caregivers in the SMA community as they seek to improve their disease knowledge and create connections with others who share similar experiences.

Our sickle cell disease-focused community, oneSCDvoice, also began an exciting new chapter in its journey. First launched in December 2017 in partnership with the Sickle Cell Disease Association of America to support the needs of SCD patients, advocates, and caregivers, oneSCDvoice has grown to encompass a large population of site users and registered community members.

To support the needs of this vibrant community during a time of rapid change in the world of SCD treatment and management, the rareLife Digital Experiences team rolled out a sweeping redesign of the platform. We are grateful to CVS Specialty, bluebird bio, and Vertex Pharmaceuticals for their ongoing commitment to the sickle cell community.. Beyond the fresh new look of the site, the redesign is also meant to help SCD patients, advocates, caregivers, healthcare providers, and others in the community more easily find the information they need in a growing library of trustworthy disease-related resources, and more prominently showcase some of the amazing conversations happening on the oneSCDvoice social wall.

We hope you’ll take time to visit the new oneSMAvoice community, as well as check out the new look of oneSCDvoice. We’re proud to support the needs of these and other rare disease community members as they seek trustworthy disease information and community connections.

To learn more about opportunities to support oneSMAvoice or oneSCDvoice, reach out to our solutions development director, Jamie Lynn.

oneSMAvoice

oneSCDvoice