At Sleep Consortium, our founding principles are based on:
Our approach to equity focuses on inclusion of all under-represented and un-reached populations globally, across multiple disease spaces, and in every pocket of society. From personal and professional experience, we know how urgent the need is to address complex diagnostic journeys and access to appropriate health care and medications, battle with insurance companies, and provide optimal care for our loved ones—that everyone regardless of age, gender, identity, or socioeconomic-status has the right to a prompt diagnosis and a choice of optimal treatment modalities.
Tackling incongruence in disability, culture, income, language discordance, and disadvantaged healthcare access is at the heart of what we seek to accomplish.
Sleep Consortium aims to elevate equity, lead on inclusion, practice ethical data sharing, maintain patient centricity, de-burden families, and implement productive collaborations with urgency, resourcefulness, and recognition of disease impact on interpersonal relationships, economics, mental, and emotional health. Under the Consortia, all partners, and collaborators that we engage with align with this core belief through our shared vision with RARE-X.
We believe the path to accelerating the understanding of Central Disorders of Hypersomnolence is based on providing extensive access to patients, clinicians, researchers, research institutions and industry partners. Data collection from existing registries and repositories and new data uploaded into the portal will be collected, connected, and shared based on patient preferences. In this sense, shared data will be gated, according to patient and stake-holder consent. Patients retain exclusive rights to their data, can withdraw their data from the portal at any time and will receive up-to-date feedback within the research community and alerted to upcoming clinical trials and new therapies.
Data provided by patients through the portal is not purchased, traded, or owned by Sleep Consortium or any affiliated organizations.
As a consortium, we facilitate various platforms that foster internal and external multistakeholder collaboration. This is demonstrated in our engagement with patient advocacy groups, on our corporate advisory council, and in our support of organizations in the rare and non-rare disease space at state and federal levels. We see our role as connectors, not just of data but of individuals, communities, and countries.
In this world of uncertainty, we identify the need to remain cognizant and sensitive to global, local, and individual evolution. Having a secure infrastructure at Sleep Consortium and a first-rate team, board, and host of scientific partners, affords space for adaptation and where necessary, re-orientation. Pioneering a new data collection platform for people affected by sleep disorders comes with the need for attentiveness, flexibility, and recognition of the challenges and changes that confront us all. The executive team understands that medical breakthrough is impossible without change, and that the power to listen, question, seek understanding and pivot in the light of new information is the basis of human progress.