Together for PURA 2026 fundraising campaign
The Foundation's 2026 campaign, 'Empowering Families, Advancing Research', with a $300,000 goal. End date not stated by the Foundation – shown here as the end of 2026.
PURA & rare disease events
Conferences, awareness days and fundraisers for the PURA community, with UK events first wherever we can find them.
Submit an eventComing up
American Epilepsy Society Annual Meeting 2026
The largest epilepsy-focused meeting in the USA. The PURA Syndrome Foundation has said it will have representatives there.
Rare Disease Day 2027
The annual international awareness day for rare conditions, held on the last day of February.
Undiagnosed Children's Day 2027
SWAN UK's annual awareness and fundraising day, on the last Friday in April. Many PURA families were part of SWAN UK before diagnosis.
2027 PURA Syndrome Conference
The annual gathering of PURA families, researchers and clinicians. Save the dates: 25–27 June 2027.
PURA Syndrome Awareness Day
PURA Syndrome Awareness Day is 23 October each year.
Recent & past
2026 PURA Syndrome Conference (Munich) – videos available
105 people attended in person and 83 virtually, including a visit to the Niessing Lab and PURA Biobank at Helmholtz Munich. Session videos are on the conference website.
UK fundraiser: Three Peak Challenge 2026 for the PURA Syndrome Foundation
UK supporters raised £2,505 for the PURA Syndrome Foundation through a Three Peak Challenge (JustGiving figures summarised by JustCharity).
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