Conference Program
All conference sessions, activities and services will be delivered in English. The BSA is currently evaluating the need for translation services. Whether you’ll be an in-person or virtual attendee, please be sure to indicate your need for translation services on your registration form and submit it by May 31. More information will be provided to those who need language assistance, by June 30.
If you are planning to attend the conference virtually, be sure to indicate this on your registration form, as well. Conference sessions available virtually are labeled as such in the Conference Program below. Virtual attendees will receive additional information and the Conference Zoom link by mid-July.
The following program information is preliminary and could be subject to change. A full, printable conference program with additional details will be available in early July. All times shown are in Central European Summer Time (CEST).
Conference Program & Schedule
Friday, 8/2/24
| 5:30pm – 7:30pm | Conference Check-In | In-person, only | All conference attendees, including children and speakers, are asked to visit the conference check-in table during this time to receive their conference badge and materials. |
| 5:30pm – 7:30pm | Welcome Reception | In-person, only | All conference attendees are invited to a casual get-together to kick off the conference. Brief welcome remarks will be given by the BSA. Light food fare and beverages will be served.
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| 5:30pm – 7:30pm | Childcare/Kids’ Activities Provider Meet & Greet | In-person, only | Childcare providers will be available to meet children and parents, and will host some fun activities for kids during the welcome reception. |
Saturday, 8/3/24
| 7:30am – 8:30am | Conference Check-In (if you didn’t check-in Friday evening) |
In-person, only | All conference attendees, including children and speakers, are asked to visit the conference check-in table during this time to receive their conference badge and materials. |
| 8:00am – 11:30am | Childcare/Kids’ Activities | In-person, only | Childcare and kids’ activities will be provided by licensed childcare providers for children aged 2-12. |
| 8:30am – 8:45am | Conference Welcome | In-person + virtual | The conference emcee will welcome attendees, review the conference agenda, and cover things to know. |
| 8:45am – 9:30am |
Session 1: Conference Ice-Breaker |
In person, only | A facilitator will lead a group activity designed for attendees to get to know each other. |
| 9:30am – 10:15am | Session 2: BSA/Registry/Rare-X Updates |
In-person + virtual | Representatives from the BSA, Rare-X and the Bloom Syndrome Registry will give updates on their activities over the past two years and their plans for the future. |
| 10:15am – 10:30am | Networking/Refreshment Break | In-person, only | Snacks and beverages provided |
| 10:30am – 11:30am | Session 3: Thriving with Bloom Syndrome |
In-person + virtual | A motivational session led by a licensed therapist on how to thrive in the face of having Bloom syndrome. |
| 11:30am – 12:00pm | Group Photo | In-person, only | All conference attendees, including children and speakers, are invited to participate in a group photo. |
| 12:00pm – 1:00pm | Lunch | In-person, only | Buffet-style lunch provided |
| 1:00pm – 4:00pm | Childcare/Kids’ Activities | In-person, only | Childcare and kids’ activities will be provided by licensed childcare providers for children aged 2-12. |
| 1:00pm – 2:15pm | Session 4: Cancer in Bloom Syndrome |
In-person + virtual | Bloom syndrome experts will provide an overview of what we know about cancer in Bloom syndrome, what to do if you receive a cancer diagnosis, plus interviews with Bloom cancer survivors. |
| 2:15pm – 3:15pm |
Session 5:
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In-person + virtual | Representatives from the Rare Disease Centre at Guy’s and St. Thomas’ Hospital in the UK will present an overview of their Bloom syndrome clinic as a model of specialized care for Bloom syndrome patients and families. |
| 3:15pm – 3:30pm |
Networking/Refreshment Break | In-person, only | Snacks and beverages provided |
| 3:30pm – 5:00pm | Session 6: BSA Olympics |
In-person, only | Attendees are invited to participate in Olympics-style activities as a fun way to end the day. There will be something for everyone, from competing in individual and team events, as well as judging and spectating. Rain plan: Event will be cancelled; attendees are invited to go swimming in the hotel’s indoor pool or enjoy time together, instead. |
| 5:00pm – 6:00pm | Free time | In-person, only | |
| 6:00pm – 8:00pm | Group Dinner | In-person, only | All conference attendees are invited to an offsite group dinner hosted by the BSA. |
| 8:00pm – 10:00pm | Young Adult Get-Together | In-person, only | Young adults (aged 18-30) with Bloom syndrome are invited to gather at a local restaurant for after-dinner beverages and conversation, hosted by the BSA. |
| 8:00pm – 10:00pm | Kids’ Movie Night | In-person, only | Children (aged 8-17) are invited to watch age-appropriate movies; snacks and drinks provided. This event will be chaperoned by adults. |
Sunday, 8/4/24
| 8:00am – 12:00pm | Childcare/Kids’ Activities | In-person, only | Childcare and kids’ activities will be provided by licensed childcare providers for children aged 2-12. |
| 8:30am – 10:30am | Session 7: Small Group Topical Discussions |
In-person, only |
Small group discussions offered concurrently in two 55-min sessions separated by a 10-min transition break, on the following topics:
Each discussion group provides an opportunity for patients and families to ask questions and share experiences about the discussion topic, and will be facilitated by a clinician or parent, as appropriate to the topic. |
| 10:30am – 10:45am | Networking/Refreshment Break | In-person, only | Snacks and beverages provided |
| 10:45am – 11:45am | Session 8: Bloom Syndrome Research Update |
In-person + virtual | Bloom syndrome experts will present on recent Bloom syndrome research discussions and invite community input. |
| 11:45am – 12:00pm |
Closing Remarks and Conference Survey | In-person + virtual | This last session of the conference will include thank you’s, reminders and a request to complete an online conference evaluation. |
| 12:00pm – 1:00pm | Lunch | In-person, only |
All conference attendees are invited for a box lunch picnic in the park next to the hotel. Rain plan: Indoor picnic in the conference meeting room |
| 1:00pm – 5:00pm | Afternoon Activities (optional, on your own) | In-person, only | Make a plan with other families to do something fun in the Frankfurt area or venture out on your own. Suggested activities will be provided by the BSA. |