Frequently Asked Questions
Have questions about the 2025 DESSH Clinic & Family Conference? You're in the right place! Whether you're a first-time attendee or a returning family, our FAQ section covers everything you need to know—from registration and travel to what to expect during the clinic and conference days.
We’re here to make your experience as smooth and supportive as possible. If you don’t find the answer you’re looking for, please don’t hesitate to reach out to our team.
1
What is the difference between the family conference and the clinic?
The Family Conference (September 17) is a half-day event open to all families, clinicians, and researchers. It includes presentations from experts, panel discussions, and opportunities to connect with others in the DESSH community. The speakers and sessions are still being finalized and will be announced soon.
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The Clinic (September 18 & 19) offers scheduled individual medical appointments for patients with DESSH. These appointments are conducted by a multidisciplinary team of specialists with experience in DESSH syndrome.
You do not need to participate in the clinic to attend the conference—families can choose to attend either or both parts of the event. However, individual medical consults cannot be made with individuals who attend without a patient. Only DESSH patients will be scheduled in the clinic.
2
How much does it cost to attend?
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$200: Covers a DESSH patient being seen in the clinic and their family's participation in the conference.
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$75: For individuals who will attend the conference only, and are not participating in the clinic.​
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This helps cover the cost of meals, meeting space, and logistics for this special event. We strive to keep fees as low as possible to support access for all families.
3
Why is there a fee to attend?
To ensure we can accommodate all interested patients and minimize last-minute cancellations, we’ve introduced a registration fee. This is the second year we are implementing it, and the $200 clinic registration fee is $50 lower than last year. The fee helps secure an accurate headcount and supports planning for an expanded clinic. It also honors the donated time of our medical team and ensures every clinic spot is used effectively.
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If this fee presents a financial hardship, please reach out to Caitlin at caitlin@dessh.org. We’re here to help.
4
Can I get a refund if I need to cancel?
Yes—full refunds of the registration fee are available through September 1. After that date, we are unable to issue refunds due to the planning and resources already committed to the clinic and conference.
If you need to cancel, please contact us as soon as possible.
5
What is the schedule for the family conference and clinic?
The event will take place over three days:
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Tuesday, September 17 – Family Conference from 8:00 AM to 1:00 PM (presentations, panels, and community time)
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Wednesday, September 18 – Clinic visits scheduled between 8:00 AM and 5:00 PM
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Thursday, September 19 – Clinic visits continue between 8:00 AM and 5:00 PM
Clinic appointments are individually scheduled. Please plan on approximately 2 consecutive hours in the clinic, with 2-3 specialist visits each day.
We’re also planning social events to help families connect outside of sessions, including a welcome reception on the evening of September 16th. These events are still being finalized and will be announced soon.
6
If I can't attend in person, can I still participate?
Yes! There will be a live stream of the conference on September 17th, so you can still view the presentations and panel discussions in real time from anywhere in the world.
Please note that while doctors will not be able to provide telehealth appointments, we are actively working on a solution to allow biospecimens to be collected locally and submitted to our biorepository.
Stay tuned for updates as we continue to expand participation options for our global DESSH community.
7
Will translation services be available at the conference and clinic?
Yes. Clinic appointments at the hospital include access to in-person translators, but these services must be scheduled in advance to ensure availability. For non-English speakers who need assistance during the conference or at social gatherings, we can also arrange translation services with advance notice. Please contact us as early as possible to coordinate support.
