How

  • Networking with patients, family members, caretakers, research laboratories, medical and mental healthcare providers, hospital and clinics, health IT developers, advocacy organizations, media, government representatives, entrepreneurs, and philanthropists to improve access to healthcare for patients with rare & complex conditions.
  • Imagining a healthcare revolution utilizing technology and bioinformatics integration to develop new ideas for research, database solutions, open data sharing, translational science, health & wellness monitoring, and personalized precision medicine to improve patient outcomes and overall quality of life.
  • Supporting legislative action that improves patient care, increases availability of diagnostics & treatment, protects patient & parental rights, advocates safety & health, encourages medical research, and ensures access to personal health records & genetic data.
  • Participating in social media campaigns that promote awareness, advocacy, activism, and research advancement for rare & complex disorders. We do not promote individual fundraisers at this time, but we do encourage donations to verifiable nonprofit organizations that fund medical research.
  • Contributing to diagnostic testing, research, and cooperative data sharing, we’re helping scientists can gain better understanding of chronic conditions and how they affect individuals, families, communities, and humanity as a whole. Research data also helps providers develop and implement evidence-based diagnostic and treatment protocols, and improves methods for addressing complex medical conditions.
  • Working together with developmental teams to find innovative ways we can improve care for chronically ill patients, while reducing unnecessary disabilities and deaths due to misdiagnosis and lack of  informed care.
  • Envisioning a future where patients and caregivers will be able to easily access the resources they need for getting an accurate diagnosis, appropriate interventions, and community support for whatever condition they have, wherever they are located.

Join us in #TestDontGuess and #RightToKnow campaigns on Twitter and Facebook! You can also take ACTION! or CONTACT us for more ideas on ways to get involved in the #HealthCareRevolution.