From National Family Voices: Please Share Your Experience and Advocacy Stories with the Genetic Alliance

This week, Genetic Alliance, in partnership with Family Voices and The Arc launched an online questionnaire  that allows experienced family advocates to share their advocacy journey, including how they developed certain skills and created the opportunities to influence systems. We will turn those experiences into stories that will inspire and encourage others to take action to improve lives and enrich communities. By collecting these stories into a publication and identifying the common themes, readers, who will be family members or individuals recently diagnosed with a genetic condition, chronic disease, disability and/or special health need, will begin to understand how to influence their own path in advocacy.

 

This online questionnaire will close on Friday, August 19.Parents (biological, adoptive, or foster), siblings, grandparents, other relatives, caregivers, and those with a health condition or disability are all welcome to participate. More details about the questionnaire can be found on the survey landing page: http://bit.ly/qii6iK 

 

There is such a wealth of knowledge by families that needs to be shared and we certainly hope that you will take a few minutes out of your busy day to either complete the survey or assist and encourage others to do the same. Advocacy has always been about getting the information needed and then turning it around so others can benefit too. Parents are tremendous experts and each parent that has ever struggled to access systems of care or education understands why providing information to someone else grabbling with the same issue is invaluable.

 

We hope you will consider participating so other families may benefit from your story!

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