CHARGE Syndrome Canada
Newsletter
Summer 2006
Vol. 1 No.11
Genetic Alliance Conference Review
"Martial Arts" parents to International tournament
Genetic Alliance 2006 Annual Conference
The “Genetic Alliance 2006 Annual Conference” in Washington celebrated 20 years of Excellence in Advocacy. The focus was to build bridges, develop partnerships, and applaud the inspirational leadership of all groups who support or give information.
“Genetic Alliance” assists mostly groups of individuals and families who are living with genetic conditions in the United States, and helps them to achieve their mission. “Genetic Alliance” is able to leverage voices with similar needs, by collecting the groups together and build capacity. “Genetic Alliance” has provisions in place to be able to affect research development and funding; help individuals gain access to services; assist groups in partnership development; and encourage and support emerging technologies.
Individuals who may have genetic conditions face the same issues in the United States and Canada. There are many barriers to seeking health care services which address their often rare disorder; there is a great delay in diagnosis; a lack of information both in access and in treatment options. In Canada we face another critical roadblock: a consistent Federal approach to these issues is needed, and Canadian politicians need to develop through consultation from stakeholder groups an “Orphan Drug Policy”.
In opening sessions on “Leadership in Action”, we learned that for organizations committed to their mandate, there needs to be four elements of sustainability. These are fundraising and resource development; marketing and communications; networking and collaboration; and volunteer development. With a clearly defined mission in place, needs must then be identified and then programs or services built around this. Throughout this process, collaboration with other organizations is essential.
Examples from a variety of groups demonstrated how the education plan for the genetic disorder had been developed. In these sessions, uniform strategies were presented in order to “get the word out” about the condition.
Other sessions worked with parents in order that they develop their own family history trees, identify risk factors, and be their own advocates to talk with healthcare providers. There are a variety of impacts on families, and the transition to adult programs for the individual with a genetic condition was a huge area of concern for many families. Problems exist for families, such as finding expert medical assistance needed once children reach adulthood; finding and funding services, especially assistance with vocational issues. Parents have to be key advocates in this process when their children leave the education system. There was a suggestion developed that groups work together in order to advocate for “adult neurodevelopmental clinics” and “adult genetic centers”, where networked relationships can be developed and evaluation and care can be coordinated.
While this conference held many other sessions and topics, there was a focus on other useful areas such as ethical and cultural issues; newborn screening; models for chronic care; and especially highlighted resources and toolkits. The greatest learning was from meeting those who had an interest in a rare disorder or genetic condition, or who suffered from one. The variety of conditions which do exist was an incredible education process in itself!
Ann L. Gloyn
Education Specialist
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