Although sickle cell may be the largest rare disease, based on prevalence, this is the least served community for so many reasons. Even the FDA has done work to increase the attention this community gets in terms of research and other resources. Pfizer has partnered with rareLife solutions to harness the power of the rareLife solutions data management system to provide credible and reliable information to the sickle cell community. Sickle cell is unlike most other rare diseases in that the community is made up of multitudes of advocacy organizations, not just one or two. These organizations each have their own missions, as would be expected. However, it is always a challenge to get all organizations in any community to work together. This partnership between Pfizer and rareLife solutions provides an opportunity for collaboration through www.oneSCDvoice.com.
Inspired Health Strategies played a small role in helping this partnership launch the oneSCDvoice.com platform. We are proud to have supported the platform development and launch. oneSCDvoice.com provides a curated experience, aggregating data relative to sickle cell curated by leadership from the sickle cell community. Users have the opportunity to connect with others in the sickle cell community and can be assured that the information they garner from the site is accurate. When you run a typical search of the web for sickle cell related topics you get thousands of results and you have to cull through those results to assess which you will believe…or not. With oneSCDvoice the results you get are abundant but all are credible thanks to the prior review of sickle cell community leadership.
If you are or know someone who is managing sickle cell go to www.oneSCDvoice.com to sign up and become part of this collaborative community.
Pfizer press release announcing the launch of oneSCDvoice.com – Pfizer One Sickle Cell Disease Voice Statement