October 2026 - PCD Awareness Campaign
Date: Wednesday 21 October 2026 at 6pm (CET time - Paris time)
Format: Online interactive webinar, 90 minutes
Participants: All patient organisations within BEAT-PCD Network
Session Chairs: Deepa Patel and Emilie Wattellier (BEAT-PCD WP7)
About the Seminar
Primary Ciliary Dyskinesia (PCD) is a rare, lifelong genetic condition that can have a significant impact on individuals and families from diagnosis throughout the different stages of life.
For people affected by PCD, patient organisations and support groups can provide an important source of peer connection, practical information, signposting and community support. Their role can extend from the time of diagnosis, through living with PCD and navigating healthcare services, to important life transitions such as adolescence, transition to adult care, family planning, education and employment.
Patient organisations can also play a broader role in the PCD community by helping to amplify the patient voice, raise awareness, facilitate connections between patients and healthcare professionals, and contribute to research and the development of future treatments.
However, establishing and maintaining a sustainable patient organisation can be challenging. Organisations may face issues including volunteer capacity, governance, succession planning, funding, communication, membership engagement, access to medical expertise and maintaining momentum over time.
There is an opportunity to learn from the experience of PCD patient organisations in different countries and from relevant patient organisations in other disease areas. Sharing practical examples and lessons learned can help organisations develop their own activities while identifying opportunities for greater international collaboration.
As part of the October PCD awareness campaign, this webinar will bring together patient-organisation leaders from different countries to share experiences, exchange practical approaches and explore how PCD support groups can become stronger, more sustainable and more empowered.
Session Aims
The session will:
Bring the international PCD patient-organisation community together to share practical experience, celebrate the value of patient organisations and identify opportunities for stronger, more sustainable and collaborative patient support.
Provide a platform for patient-organisation leaders to exchange best practice and for patients, families and healthcare professionals to learn how they can connect with and support these organisations.
Programme
18:00-18:05 - Welcome and introduction - Led by session chairs
18:05-18:10 - Why patient organisations matter - Short scene-setting: the patient journey, the role of peer support, information and empowerment, and the potential contribution of patient organisations to the wider PCD community
18:10-18:30 - Theme 1: Building a strong support organisation - Governance, board structure, medical/scientific advisors, roles and responsibilities, meetings, national/regional models, membership, volunteer management, succession planning
18:30-18:50 - Theme 2: Communication, engagement & visibility- Newsletters, social media, WhatsApp/online communities, websites, events, patient stories, videos, awareness campaigns, reaching newly diagnosed families and engaging younger generations
18:50-19:10 - Theme 3: Fundraising & sustainability - Membership fees, fundraising events, partnerships, grants, sponsorship, corporate relationships, volunteer capacity and maintaining long-term sustainability
19:10-19:20 - Patient organisations as partners for research & change - How organisations can contribute to research, patient registries, natural-history studies, clinical trials, research priorities and treatment development; examples from PCD and other rare diseases
19:20-19-30 - International Q&A & call to action - Audience questions, key takeaways, opportunities for collaboration and practical next steps
19:30 - Closing statement - Session chairs
Registration
PCD Support Group should receive an invitation to the webinar, if not please contact us!