Addressing Differences in Health Outcomes in EDS, POTS, and MCAS:
An Arizona Community Partnership
Do you live in Arizona with EDS, POTS, or MCAS?
Join us! Register below.
*Ehlers-Danlos syndromes, postural orthostatic tachycardia syndrome, mast cell activation syndrome
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Participants must be:
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Age 18 or older
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At least one EDS, POTS, MCAS (self-diagnosed is OK)
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Lived experience with the condition(s)
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Live in the state of Arizona
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5 sessions total with in-person and virtual options: (1 - 2:30 pm AZ time)
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January 17 (Mesquite/Tumbleweed)
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February 14 (Ironwood/Sagebrush)
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March 28* (Virtual-only, no in-person)
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April 4 (Mesquite/Tumbleweed)
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May 16 (Ironwood/Sagebrush)
Registration is required at least 24 hours before the workshop.
The purpose of this project is to learn from the patient community about your unmet needs.
As a thank you for engaging in the listening sessions, participants will receive complimentary information to support them on their journey.
In-Person Location:
Tucson Medical Center, Marshall Conference Center
5301 E. Grant Rd. Tucson, AZ 85712.
The Marshall is located on the east side of the campus, near the SE bridge entrance off Craycroft. Link to map. There are multiple rooms. See above for Mesquite/Tumbleweed or Ironwood/Sagebrush, depending on date.
A Zoom link will be sent out via email with registration.
A community partnership between Tucson Medical Center and Northern Arizona University, this program is supported by NAU's SHERC’s Community-Campus Partnership Support Program.
Frequently Asked Questions:
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What should I expect?
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A community gathering (virtual or in-person) with two main components:
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Listening sessions: breakout groups (5-10 people) to discuss pre-determined questions
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Community workshops: educational information on topics such as self-advocacy, navigating challenges in health care management, and how to determine when information is accurate (topics will be determined after the initial session based on participant needs).
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Why should I participate?
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Participation is completely voluntary. We hope that the workshops will help to further the quality of resources and options for patients with these conditions through gathering information and learning from the patient community (listening sessions). We will also provide practical learning to support participants' daily lives for the second component of each workshop.
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Is this research?
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No, this is not a research study. It is intended to serve as a foundation for future projects to emerge.
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How will the information from the listening sessions be used?
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The information will be gathered to better understand common themes and support future educational content. This may include content at patient conferences, online materials, and education for health care providers. It may lead to research in the future, but this project itself is not collecting research data.
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Are masks required?
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No, masks are not required. However, with the recent increase in flu cases, ongoing viral illness spread, and vulnerable individuals, we encourage you to mask if joining in person.
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Will I receive any compensation for participating?
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No, this project will not include any monetary compensation. We hope you will find it mutually beneficial, as we will provide resources and education in support of your time and energy, giving back to us through the listening sessions.
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Who is involved in this project?
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This project is led by Emily Rich, PhD, OTR/L (Tucson Medical Center) and Jessica Salyers, OTD, OTR/L (Northern Arizona University). Additionally, several experts from various disciplines serve on our advisory board. Additionally, student volunteers will be included during the sessions themselves to support.
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Note: registration closes at noon the Friday before each workshop.