We invite all families to participate in the 2nd European family summit, which will be held on October 11th in Heidelberg, Germany.
Join us for a day of scientific presentations about the latest research of STXBP1 and connect with other families, researchers, clinicians and advocacy organizations. You will also have the oppurtunity to participate in ongoing research projects.
We also invite your child with STXBP1 and his/her siblings to join the summit, however we will not offer child support. We kindly ask you not to bring your younger children to the lecture hall to limit distractions – but there will be additional rooms with a live streaming for families with younger children as well as a play room.
Registration deadline: September 15th, 2025.
No conference fee for families. Hotel booking at own responsibility and expense (accommodation not included).
Program
Please download the complete program as pdf file here
FAMILY DAY | SATURDAY 11th
| 8.30 | Registration |
| 9.00 | Kick Off (German family group) & Family story (Fabienne Pietrusky & Katja Hoffmann) |
| 9.15 | Session 1: STXBP1 in a short run |
| Genetics & disease mechanisms Hannah Stamberger (Antwerpen) & Matthijs Verhage (Amsterdam) Clinical presentation & standard of care Ingo Helbig (Philadelphia) FAQ | |
| 9.45 | Presentation of family groups |
| 10.45 | Coffee break |
| 11.15 | Sumup of the research summit 2025 Kim Thalwitzer (Heidelberg) |
| 11.35 | Session 2: Ongoing studies |
| ESCO natural history study & registry Ganna Balagura (Genua) STARR natural history study Ingo Helbig (Philadelphia) FAQ | |
| 12.20 | Lunch break |
| 14.20 | Global SUDEP Update: Research and Progress Oskar Killinger Stiftung |
| 14.30 | Roundtable 1: Therapies in Development for STXBP1 and Clinical Trials |
| Participants: James Goss (STXBP1 Foundation) Charlene Son Rigby (STXBP1 Foundation) Hilgo Bruining (Amsterdam) Scott Damarest (Colorado) | |
| 15.45 | Coffee break |
| 16:15 | Roundtable 2: Unmet needs, organization & support of patients & families |
| Participants: Kelsey Ax (Amsterdam) Sietske van Till (Rotterdam) Gilberte Schnur (STXBP1 Germany) |
ACTIVITIES AT THE FAMILY SUMMIT
• Live streaming rooms
• Playroom
• Possibility to participate in research projects
• 1 on 1 genetic counseling sessions (Katie Angione, Colorado & Sarah Ruggiero, Philadelphia)
Venue
The summit will be held at the Children’s Hospital Heidelberg.
Im Neuenheimer Feld 410
69120 Heidelberg
Germany
Transportation to the STXBP1 Summit locations
Directions by tram or Bus:
- Tram line 21, 24 or 25 to Berlinerstraße then:
- bus line 20, 28, 31 heading to Neuenheimer Feld
- Bus Stop Summit: Neuenheim, Med. Klinik/Chirurgie/Zoo
- Bus Stop Family Summit: Neuenheim, Jugendherberge
Real-time connections:
www.bahn.de (train connections)
www.vrn.de (for tram and bus)