Accord Alliance's mission is to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders.
A New Standard of Care
In 2006, a consensus for a new paradigm of care for people diagnosed with "intersex" conditions was developed by 50 international experts and patient advocates. Accompanied by a change in nomenclature referring collectively to these conditions as disorders of sex development (DSD), a new standard of care was proposed focusing on improved quality of life through a patient-centered model of care with an emphasis on an interdisciplinary team approach to health care delivery.
Since no institution has yet to fully implement the new standard of care it falls short of its aim to positively affect the lives of people with DSD and their families. There is a strong need for an organization like Accord Alliance to assume the role of a convenor of stakeholders across the health care system and DSD communities in order to promote this new standard of care. We are filling this role by becoming the "go-to" organization for resources and information for health care professionals and the community. At the local level, we are fostering this approach by providing consultation and support to interdisciplinary teams striving to deliver the new standard of care to persons with DSD.
During our initial two years, we are focusing our efforts in two important areas. First, we are creating an on-line repository of information and resources to support understanding and improvements in the care and well-being of persons with DSD and their families. Second, we are partnering with emerging interdisciplinary healthcare teams and working together to create the resources they need to successfully implement the new standard of care.
If we are successful:
- People and families affected by DSD will consider themselves well informed about DSD; they will have the skills and support they require to promote a positive health-related quality of life and overall well-being; and they will express satisfaction with their participation in treatment decisions and their overall healthcare experience.
- Accord Alliance will have forged solid partnerships with medical and allied healthcare professional institutions and with community-based (consumer) organizations that share our objectives.
- A model of care to guide the interdisciplinary team approach and family-centered decision making will be developed by working collaboratively with stakeholders and will be widley shared in the form of a "manual" or "tool-kit."
- Best practices and solutions for barriers to the successful implementation of the model of care will be identified, evaluated, and broadly disseminated.
- Over time, interdisciplinary teams will be in place across the country, and recognized as fully operational, effecitive, and successful.
We are a hosted project of the Tides Center, which partners with individuals, groups, and funders to implement programs that accelerate positive social change. Tides Center is a tax-exempt 501c3 organization; donations to Accord Alliance are tax deductible.
We have received a generous start-up grant ($305,000 for 2008-2009) from The California Endowment, whose mission is to expand access to affordable, quality health care for underserved individuals and communities, and to promote fundamental improvements in the health status of all Californians.
We are also grateful for more than one hundred of you who have generously given to support our programs.
- New Article on Developing Multidisciplinary Teams
- Summary: Improving Collaboration and Communication in DSD Care Meeting in OKC
- Your Child Resources and Links
- New Support Groups Formed at LIJ/Cohen Medical Center
- Pediatric Gynecology as a Critical Component of Surgical and Non-Surgical DSD Care
- Report from the 2011 Hypospadias and Epispadias Meeting