https://www.gosh.nhs.uk/our-research/our-research-infrastructure/nihr-great-ormond-street-hospital-brc/support-researchers/brc-events/bpan-day/

Beta-Propeller Protein-Associated Neurodegeneration (BPAN) Family Day 2026

Photo of BPAN charity members/parents and two patients

18 Apr 2026 10 a.m. to 18 Apr 2026 5 p.m.

Zayed Centre for Research into Rare Disease in Children, London

Registration fee: Free (Registration is mandatory)

The National Institute of Health and Care Research (NIHR) Great Ormond Street Hospital Biomedical Research Centre (GOSH BRC) Accelerating Novel Therapies (ANT) Theme and the Action for BPAN Charity is excited to host its first BPAN Family Day on Saturday April 18 2026. The Beta-Propeller Protein-Associated Neurodegeneration (BPAN) Family Day 2026 will bring together families, researchers and clinicians to share knowledge, lived experiences, and shape the future of BPAN research and care.

This is a one-day event and will be held in London. We have space for at least 50 attendees. This event is free, but registration is required to ensure we accommodate the needs of all attendees.

Event Objectives

  • Share current understanding of research progress on BPAN
  • Gather lived experiences to guide future research and care strategies
  • Empower the BPAN community by connecting stakeholders
  • Collaboratively identify research priorities and care needs

Programme Highlights

The day is split into 3 sessions with lots of time for breaks, family catch-up and play activities for children.

Session 1: Research in Beta-Propeller Protein-Associated Neurodegeneration (BPAN)

Short, lay-friendly presentations from researchers and clinicians on BPAN gene therapy, clinical gaps, and future directions which will be followed by a panel discussion to answer any questions you might have.

Session 2: Living with BPAN

Action for BPAN will highlight the work that they do and the support opportunities available. This will be followed by presentations from families living with BPAN.

Session 3: Workshop - Co-designing the Research Roadmap

In this session, you will help researchers and clinicians identify treatment priorities, care needs and diagnostic priorities.

Who Should Attend?

  • Families affected by BPAN
  • Researchers and Clinicians

Registration

Attendance is free, but registration is required. Please register here: BPAN Family Day 2026 Registration