Pfizer Inc. announced this week the launch of oneSCDvoice, a digital platform that aims to be a clearinghouse of support, information and resources for those with sickle cell disease (SCD).
Developed in collaboration with SCD patients, advocates and medical experts, oneSCDvoice offers access to disease education from multiple sources, information about clinical trials, and includes an online social wall for community conversations.
Sickle cell disease, a lifelong and debilitating disorder, restricts blood and oxygen flow, which affects red blood cells. The disease causes sudden, severe pain, can lead to organ damage and can shorten life spans.
SCD, though rare, affects approximately 100,000 people in the United States. About 1 in 13 African-American babies is born with the sickle cell trait, according to the National Institutes of Health.
Pfizer officials said such an initiative is vital due to misinformation about the disease, as well as the need for a forum for those affected to share information and provide support.
“This new digital platform is the result of ongoing collaborations Pfizer Rare Disease has had with the sickle cell disease community to learn about support and resources that encourage the overall health and well-being of those living with SCD,” said Dr. Kevin W. Williams, chief medical officer of Pfizer’s rare disease department. “We are proud to continue our work with the community, and are pleased that through these collaborations we can continue to address their unmet needs.”
The platform offers three unique features:
* Trusted Resources: A library of links to credible information about SCD, curated by advocates, patients, and medical experts without Pfizer influence
* Smart Social Wall: Community-driven conversations with material integrated from trusted resources
* Clinical Trial Education: Educational information on the clinical trial process and facts to help debunk common myths about clinical trials
Pfizer has partnered for the initiative with the Sickle Cell Disease Association of America (SCDAA), a national organization that has been supporting the needs of the SCD community since 1971.
“Various endeavors, such as oneSCDvoice, are all important tools that enable people with sickle cell disease to join together and access information to help manage their disease,” said Sonja L. Banks, the association’s president and chief operating officer. “Together with the community and Pfizer, we hope to empower those living with sickle cell disease to self-advocate and unite their voices as one community.”
Additional collaborators include individuals from patient advocacy organizations, medical and scientific experts, and social media leaders.
The platform is developed and maintained by rareLife solutions, a health care research, communications, and technology company that focuses on serving rare disease communities.
Those interested in joining may register at no cost at http://www.onescdvoice.com.