Frequently Asked Questions
Have questions about the 2026 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 16) is an 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 Clinic (September 17 & 18) 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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$250: 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.
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. The fee helps secure an accurate headcount and honors the donated time of our medical team to ensure every clinic spot is used.
If this fee presents a financial hardship, please reach out to info@dessh.org. We’re here to help.
4
Can I get a refund if I need to cancel?
Registration fees are non-refundable in most circumstances due to the planning and resources committed to the clinic and conference. If you need to cancel, please contact us as soon as possible.
While the conference is open to all, the DESSH clinic is limited to 30 patients. If demand exceeds available clinic spots, patients will be selected, and those who are not selected will receive a refund.
Families who can only attend the event if they receive a travel stipend, but who are not awarded one, may receive a refund.
5
What is the schedule for the family conference and clinic?
The event will take place over three days:
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Wednesday, September 16 – Family Conference (presentations, panels, and community time)
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Tuesday, September 17 – Clinic visits scheduled between 8:00 AM and 5:00 PM
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Wednesday, September 18 – Clinic visits continue between 8:00 AM and 4:00 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 15th. These events are still being finalized and will be announced soon.
6
Can I attend the clinic or conference remotely?
At this time, we are not able to offer virtual or telehealth appointments as part of the DESSH Clinic. The clinic is designed around an in-person research and clinical care model that includes standardized evaluations and the collection of biological samples, which are essential to advancing our understanding of DESSH and supporting ongoing research efforts.
We understand that travel can be challenging, and we continue to look for ways to support families in attending, including offering travel stipends when possible.
A live stream of the conference will be available on September 16th, so you can still view the presentations and panel discussions in real time from anywhere in the world.
7
Will translation services be available for attendees?
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.
