Patient Board
The Patient Board is an advisory group made up of people with lived experience of Long Covid. It aims to ensure the toolkit is valuable and relevant to those dealing with Long Covid. The board will be diverse and inclusive to represent the needs of all people with Long Covid.
What does the Patient Board do?
Give feedback on the Toolkit. Things like: What treatments should we research first? What diagnostic tools are most useful to add? What features would you like to see? Are the texts easy to understand? Do you find the Toolkit easy to use?
Make sure groups and organizations in the community are represented. For example, by helping recruit people with Long Covid in user tests, and representing the Toolkit in national patient organizations.
Act as ambassadors for the Long Covid Toolkit on national patient organizations in the chronic illness/post acute infection syndrome (PAIS) community.
Communicate with and help oversee the Patient Review Panel.
Collaborate with the Scientific & Clinical Board via the Advisory Board. Read how these boards interrelate.
The Board currently meets online once every two weeks.
Patient Board members
The Board is currently being established. We aim for a total of 20 people.
Ariel Conn is the founder of Mag10 Consulting. As a consultant and expert, she works with research institutions and think tanks to help with research, science communication, and project management for various scientific and governance issues, including autonomous weapons systems, AI ethics and policy, nuclear weapons, climate change, and other global catastrophic risks (GCR).
Ariel contracted Covid 19 in the summer of 2020, and suffered with Long Covid for about 1.5 years. She is now fully recovered and writes about her experiences on The Healing Pathways newsletter and The Healing Pathways website.
Jacquie Luciano
Jacquie (she/her) is a first generation Filipino-American, wife, and mother of two children. She’s a former Public Health Surveillance Nurse and was working as a Regulatory Consultant until she became disabled by Long Covid and Associated Diseases (LCAD) in January 2022. Jacquie has experienced first-hand the challenges of navigating a complex healthcare system while battling Long Covid and Myalgic Encephalomyelitis (ME), both of which lack FDA-approved treatments. Inspired by her own struggles, she strives for disability and racial justice, aiming to bring about positive change in healthcare and beyond.