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June RDLA Webinar - Shared screen with speaker view
Sunny Ammerman
Hello! :) My name is Sunny, and I am Indiana's Rare Action Network Community Engagement Liaison! If you live in my state and would like to connect so we can more effectively network, please reach out to me at sunshine.ammerman@rareaction.org
Kollet Koulianos
Katelyn and Anne have the slides and can share them. I am happy to participate in any presentations if you would like.
Deborah Vick
Please let me know if CalRare or other groups from California are here.
Deborah Vick
Thank you for the Burden Study. We are facing that now. As it is drives so much for the community and personally.
Samantha Wilder
With the rise of California’s Privacy Act and similar legislation, has there been any effort to quantify the value of all the personal health data many in the rare disease community voluntarily disclose in an effort to mitigate other access barriers and advance treatments?
Deborah Vick
Severe concerns for “real” cost in California for the Rare Community, personally and as an advocate.
Deborah Vick
Great Job Patricia… I know you have been working hard on this
Sunny Ammerman
That's wonderful news! :)
Stephanie Fischer
Was the burden study reviewed by an IRB?
Annie Kennedy
Annie Kennedy
yes - the Burden Study is IRB approved
Stephanie Fischer
AWESOME! I ran into an issue with another survey which was anonymous with no contact info captured because it wasn’t IRB approved.
Sunny Ammerman
RareAction.org has an awesome tool where you can imput your info and it will automatically generate a letter in support of the legislation that you can send to all of your legislators with a single click!
Sunny Ammerman
Thank you all so much for your awesome info and answers! <3