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Q&A #1 with Patient Families
Manage episode 361069756 series 3349924
Content provided by n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen). All podcast content including episodes, graphics, and podcast descriptions are uploaded and provided directly by n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) or their podcast platform partner. If you believe someone is using your copyrighted work without your permission, you can follow the process outlined here https://ppacc.player.fm/legal.
Amber Freed and Shanna Tolbert join n-Lorem founder and CEO, Stan Crooke, for the first ever Patient Empowerment Program Q&A episode. Amber and Shanna are two nano-rare patient mothers and rare disease advocates who have experience with the n-Lorem pathway to treatment as caregivers. Through their experiences, and by canvasing others in the nano-rare community, they’ve compiled questions aimed to help current and potential n-Lorem patients and their families become more knowledgeable about the process, receive advice, understand side effects, and more! Stan sits down with these patient families to have a conversation and together address questions from the nano-rare community.
Question Bank:
- How do you apply to be an n-Lorem patient and who do you need on your team to help? 05:26
- How does the Foundation assess cases? 05:26
- Once a patient is accepted, what is the best way to track the progress of the ASO program? 12:45
- Any advice for when seeking information from a research physician who isn’t communicative? 14:05
- How often should a patient expect to hear communication from a research physician? 15:50
- What is hydrocephalus, and should patients be concerned about the side effect? 19:30
- If side effects occur in treated patients, will subsequent patients be notified in real time? 30:55
- What is the difference between an ASO and gene therapy? 33:55
- How is n-Lorem defining an “optimal ASO”? 37:20
- Can n-Lorem help patients who are severely advanced in their disease? 44:10
- How can treating one person can lead to breakthroughs for many more? 39:40
- What is Stan’s favorite success story from his career? 46:20
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