June RDLA Webinar - Shared screen with speaker view
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 firstname.lastname@example.org
Katelyn and Anne have the slides and can share them. I am happy to participate in any presentations if you would like.
Please let me know if CalRare or other groups from California are here.
Thank you for the Burden Study. We are facing that now. As it is drives so much for the community and personally.
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?
Severe concerns for “real” cost in California for the Rare Community, personally and as an advocate.
Great Job Patricia… I know you have been working hard on this
That's wonderful news! :)
Was the burden study reviewed by an IRB?
yes - the Burden Study is IRB approved
AWESOME! I ran into an issue with another survey which was anonymous with no contact info captured because it wasn’t IRB approved.
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!
Thank you all so much for your awesome info and answers! <3