00:15:20 Sarah O. Lawrence: All lines are muted, due to the large number of participants​ The chat is open for questions or discussion​ This presentation will be made available on our website after today's session (ADCollaborative.org). 00:18:37 Sherene Shalhub: https://www.sciencedirect.com/journal/seminars-in-vascular-surgery/vol/35/issue/1 00:44:10 Heidi Manning: Will these slides be available to share in an email? 00:45:20 Sarah O. Lawrence: Hi Heidi, we will be sharing the meeting recording - I'll double check with Sherene to make sure the slides are okay for sharing as well. Thanks! 00:46:16 Heidi Manning: Okay, thank you! 00:49:10 Sarah O. Lawrence: All of these articles are open access and available for viewing and downloading at the Seminars in Vascular Surgery website: https://www.sciencedirect.com/journal/seminars-in-vascular-surgery/vol/35/issue/1 01:02:38 David Huntley: it would be interesting to know how many physicians who took the survey were ER. 01:05:28 Jenney Lee: Three physicians listed their specialty as emergency medicine. 01:06:24 David Huntley: Apologies, please remind me now many total? 01:06:51 Sarah O. Lawrence: ADCollaborative website: http://adcollaborative.org/ 01:07:20 Sarah O. Lawrence: Today's report will be posted to the Community Reports page on our site, where you can find previous reports as well: http://becertain.org/partnerships/ADCollaborative/reports 01:07:21 Dorothea Cernera: Thank you so much for this information !! 01:09:04 Evelyne Asselin: Is your reach international or aimed only at Us physicians? 01:09:30 Cynthia Ornelas: Is there a support group near San Diego that can speak to the effects and prognosis of the medicines we have to take? 01:09:49 Jenney Lee: David, there were 148 total providers. 01:12:53 Sarah O. Lawrence: Cynthia, and others who have this question, our website has links to some online-based support groups, as well as organizations like Aortic Hope that offer support: https://www.becertain.org/partnerships/ADCollaborative/resources. Others should chime in what they know of support group offerings! 01:13:16 David Huntley: Thank you Jenney. :) 01:14:44 Evelyne Asselin: If in Canada, there's a very active Facebook group for Marfan Syndrome Canada Support Group 01:15:37 Keith: I'm a member of the Aortic Warriors FB group that is global as well. The stories and info have been very helpful in helping me. 01:15:55 Lindsey Rusche: GADA Canada runs a monthly virtual meet-up for those who either live with aortic risk, have genetic aortic disorders or their caregivers/families. @aorticdisorders on Facebook/Instagram or twitter. gadacanada.ca 01:18:48 Katelyn Wright: I have to hop off for another meeting. Incredible work by the team here and I can't wait to see the evolution of this research over time! 01:19:11 Sarah O. Lawrence: Thank you Katie! 01:19:21 Heidi Manning: I am an acupuncturist in Oregon and soon to be in Washington. I would like to help disseminate information in regards to being able to help identify symptoms so that an acupuncturist can refer to ER or physician appropriately. I would also like to be a part of being part of the support team for someone living with aortic aneurysm, and their family members. I can also speak to caring for a family member who has lost her husband to a thoracic aortic dissection, and my role in her life since then. 01:20:04 Jenney Lee: Thank you everyone for being here today! I need to leave to lead another meeting. 01:20:42 Ellen Hostetler: Hoag in Southern CA has an online support group for aortic dissection facilitated by a licensed nurse practitioner and genetic counselor. 01:21:42 Ellen Hostetler: https://www.hoag.org/community-education-classes/event-details/aortic-dissection-survivor-support-group/ 01:22:21 Irman Forghani: iforghani@miami.edu 01:24:00 Pieter de Haan: Thank you for this great work! I need to go. 01:27:55 Evelyne Asselin: For some reason I can’t find how to raise my hand for Irman. Not sure how relevant it is to your research but one of the issue I personally faced towards genetic testing was that my family was against it because of the fear of impact once you get the genetic diagnosis on getting insurance etc. vs what was seen as very few gain from getting a genetic diagnosis. I think education on what it means to get a genetic diagnosis in your day to day life (buying a house, life insurance, getting access to better care) would be great to eliminate what I view as urban legends surrounding it. 01:34:21 Charlotte Grass: Thank you for a great presentation, I have to leave. 01:35:14 Keith: Aortic disease gives us PTSD; Pre-traumatic stress and post traumatic stress disorders 01:35:16 Cynthia Ornelas: This was my first meeting. Thank you for all the work you are doing. I was given a couple places to reach out to for the support I have been praying for. I'm dealing with kidney issues now because of my high dosage of metropolo and I hope you continue your work and research. 01:38:51 Sherene Shalhub: https://www.thinkaorta.us/ 01:39:23 Lindsey Rusche: Thinkaorta.com is the main hub 01:39:33 Sherene Shalhub: Shalhub@uw.edu 01:39:42 David Huntley: Good to see everyone! 01:40:00 Heather McLaughlin: Thank you! Looking forward to reading the papers. 01:40:17 Irman Forghani: Thank you so much! 01:40:45 Evelyne Asselin: Thank you for this! 01:40:45 Mark Martucci: Thank you very much