Disease InfoSearch Inclusion Guidlines
To ensure that the information accessed and used for making healthcare decisions is reliable and useful, Genetic Alliance reserves the right to include or exclude organizations using these established guidelines and other assessment procedures. Organizations that are not accepted into Disease InfoSearch are encouraged to use these guidelines as a tangible set of standards as they continue developing and upgrading information and resources and providing services and support in response to public inquiries about their specific disease.
- The organization’s primary mission is related to human genetics and/or health. Genetic Alliance supports individuals living with genetic conditions and their families.
- The organization’s mission and activities are consistent with Genetic Alliance Guiding Principles.
- The organization is an incorporated nonprofit organization or is working toward this status.
- The organization provides information, referrals, and/or support to the public and disease community. These services can include providing objective, disease-specific information; peer support; financial support; access to researchers; advocacy on behalf of a specific disorder or many disorders; genetics services; etc.
- The organization provides quality information that is up-to-date, accurate, and culturally-sensitive. In the rapid pace of today’s world, it is important to be aware of and sensitive to changes in information, research, the public’s perception, and the needs of diverse communities.
- The organization lists contact information such as a telephone number, email address, office address, or other means for the public to contact them. Communication with the public is essential to providing support and remaining current.
- The organization provides evidence of accountability in governance, including a Board of Directors, a Medical Advisory Board, staff listing, etc. Shared management, transparent governance, and professional partnerships contribute to excellence in the provision of quality services, support, and resources to organization members and the public.
- The organization is committed to working in collaboration with other advocacy organizations, as well as professional and research associations, researchers and health professionals. Active partnerships of these kinds demonstrate an organization’s commitment to being accountable, reliable, current, and proactive.
- The organization promotes its condition in a proactive manner that is respectful of the needs and interests of other advocacy organizations.
- The organization works to provide objective verification that it serves as a quality resource, (e.g., a Health On the Net Foundation or HON approval, BobbyT seal, public feedback, or website awards provide evidence that the organization recognizes the importance to public users of accreditation and review processes).
- The organization’s website is maintained on a consistent and thorough basis, and webpages prominently display the date that the page was most recently updated. Static websites often contain outdated information, which can mislead or even harm consumers looking for high-quality resources.
