#006. A resource you need! A discussion with Barbara Kelley, Executive Director of the Hearing Loss Association of America (HLAA)
Here’s a link to her bio. https://www.hearingloss.org/about-hlaa/our-team/staff/
They did a survey on the impact of people with hearing loss and the pandemic. https://www.hearingloss.org/hearing-loss-pandemic-survey/. Here’s a brief video on it.
She is also on the steering group for the newly-formed Cochlear Implant International Community of Action – a global effort to raise awareness and advocacy about cochlear implants.
HLAA resources for COVID and individuals with hearing loss: https://www.hearingloss.org/coronavirus-covid-19-resources/
They also have great webinars which are free and open to the public: https://www.hearingloss.org/programs-events/webinars/schedule-recordings/
Virtual convention in June: https://www.hearingloss.org/programs-events/convention/
HLAA is convening a meeting for the FDA on sensorineural hearing loss. It is open and free to the public; the audience is for FDA scientists to understand the impact of hearing loss on people. We will have people with hearing loss talking about that.
About the PFDD meetings
Patient-Focused Drug Development (PFDD) meetings were started by the Food and Drug Administration (FDA) to find a better way to hear directly from patients, their caregivers, and families.
Over several years, the FDA conducted more than 25 PFDD meetings for a variety of diseases, to learn how the process could work (https://www.fda.gov/industry/prescription-drug-user-fee-amendments/externally-led-patient-focused-drug-development-meetings). These meetings are planned by patient advocacy organizations and are called Externally-Led Patient-Focused Drug Development meetings. To date, there have been over 40 EL-PFDD meetings. Several important outcomes of the meetings include having a recording, a transcript, and a Voice of the Patient report (https://ataxia.org/ataxiapfdd/) . The Voice of the Patient report summarizes the meeting and gives anyone interested an overview. These reports are posted in the public domain and on FDA and patient org websites (https://pancreasfoundation.org/pfdd2020/).
Here is the registration link for the meeting on Sensorineural Hearing loss on May 25.
https://pfdd-hlaa-meeting-registration.gr8.com/?utm_medium=email&utm_source=getresponse&utm_content=HLAA+is+Hosting+a+Webinar+on+April+8+and+Convening+a+Meeting+on+May+25&utm_campaign=
(Editing and mixing by yours truly. Go easy on me...I'll get better. Transcription was done by automated AI software online. There are errors. Please forgive them. I will continue to look at options for better transcriptions also. )
Original music by Lauren Zettler<
