What can you do as an advocacy organization to support clinicians giving a diagnosis and make sure families are getting accurate, balanced information about these genetic conditions?
- Build relationships of trust between the disability and medical communities and provide clinicians information and training on how to deliver a diagnosis.
- Get accurate, up-to-date, and balanced resources into the hands’ of clinicians to give families at the moment of diagnosis. This information should cover medical issues, life outcomes, and authentic images.
- Families should be provided referrals to organizations or individuals for compassionate support available locally and online.