The characteristics of genetic disorders call for complex and comprehensive
plan of management. It requires the
active participation of the family (immediate and extended), healthcare
providers (specialists in various disciplines), basic scientists and support
groups.
Advocacy and support groups play an important role in ensuring that
patients and families receive the required the services. Genetic Alliance is an
organization that “serves as an open space for sharing valuable resources,
creative tools, and innovative programs.” http://www.geneticalliance.org/about.
The Genetic Alliance provides a “Mandate for Quality Genetic Services”
worthy of review.
An advocacy group such as the Genetic Alliance could be a valuable
resource for patients and families with genetic disorders. Such a group should be one that forms a partnership
with various facilities and groups and an information portal that could help
patients and families with information required for the diagnosis, therapy and
management.
Who will take the initiative to start such a resource? It would be individuals familiar with the
technical and scientific aspects of genetic disorders and familiar with the
needs of patients and families. That
would be interested genetic counselors, clinicians, basic scientists and
families of patients with genetic disorders.
It is worth reviewing the history of the Genetic Alliance http://www.geneticalliance.org/about/history.
