About
PURA Syndrome Conference | June 26-28, 2026The conference will be held at Holiday Inn Munich – City Centre
Business hubs, the main train station, Munich Airport, and Munich Fair Ground are all easily accessible. Explore the vibrant surroundings, featuring cultural highlights such as the Deutsches Museum, the Gasteig, or the artistic Haidhausen district. For a relaxing stroll, the iconic Marienplatz, with landmarks like the Frauenkirche, St. Peter’s Church, and the Viktualienmarkt, is just minutes away.
**EARLY BIRD REGISTRATION**
(Discounts apply to adult tickets only)
January 1 – Rare Disease Day (February 28): Adult tickets are only $80 – use code EARLYBIRD26 to get your discount
March 1 – April 30: Adult tickets are $90 – use code EARLYBIRD26 to get your discount
May 1 – June 28: Adult tickets are $100
Please note: We have tried to keep costs low so that more people would be able to attend. If you are able to give more than the required fee, we encourage you to do so to help offset the conference costs.
Experience
We have a variety of activities planned for the conference including discussions, networking events and activities.
Research
The conference will be packed with sessions focusing on current research and information vital to PURA families. Researchers and clinicians are expected to attend in person, and it is an opportunity for parents to meet these extraordinary people – and to have the researchers meet the parents and our extraordinary children. Expect to learn, question and engage with the presenters in the formal sessions and socially at the end of the day.
Learning from Others
The conference is an important time to connect as parents, siblings, and caretakers. These connections strengthen us and provide a way to share and learn from others in our PURA family. Parents and caregivers will participate in panel discussions and 1:1 conversation that get to the heart of issues families face every day. We’ll also have time to just talk and meet new friends!
WHAT YOU CAN DO: Join us! If you can, please join in person. We know this is not possible for many of our families and we’ll record many of the sessions to post after the conference. We will also have a virtual option avaialable.
Send your questions! Let us know what questions you would like to ask the researchers and we will address them in the question and answer session. Email them to conference@pura-syndrome.org.