EAACI Patients Organisation Committee News Archive

You are invited to the EAACI Special Session! Let’s discuss “Benefits of engaging with patients in clinical trials and decision-making” at the EAACI Annual Congress 2023

The EAACI Patient Organisations Committee (POC), kindly invites you to the EAACI Special Session that will take place during the EAACI Congress 2023 in Hamburg on Friday 9 June 2023, 15:00-16:30 in Hall Y 01+02, the Congress Centre Hamburg CCH. Online attendance will also be available at Channel Y 01+02.

During the EAACI Special Session organised by POC, Giulia Gabrielli from European Medicine Agency will share the framework for engagement between the Agency and the patients. The European Medicines Agency (EMA) and patients have been actively interacting since the creation of the Agency in 1995. EMA states that patients bring a 'real-life' experience as well as specific knowledge and expertise to scientific discussions on medicines and on the impact of regulatory decisions.

Dr Kirsten Perrett, Director of Australia National Allergy Centre of Excellence, will be sharing their experience in receiving the federal funding for allergy prevention and management in collaboration with the patient organisation Allergy & Anaphylaxis Australia. She says “Together, we will implement the first national allergy registry alongside a live anaphylaxis reporting system, which will facilitate precision medicine and improve consumer safety and prevent anaphylaxis deaths.”

Regarding the civil society perspective, Susanna Palkonen, Director of European Federation of Allergy and Airways Diseases Patients Associations (EFA) will be sharing their long-lasting track record in participation to research projects. EFA believes synergies between patients and researchers are key to understanding, treating and preventing allergies and airways diseases.

In the recent years, the involvement of patients in research has been widely recognised as beneficial, helping to identify research priorities, reducing the withdrawal rate in clinical trials, and communicating scientific results. POC Member Mikaela Odemyr, President of Asthma- and Allergyassociation will be sharing their experience in Sweden.

The session chairs will be Carla Jones, CEO of Allergy UK, past POC Co-Chair and Ozlem Ceylan, President of Living with Allergy Association, current POC Chair. The session will also have a panel discussion where chairs will invite the audience to share their experiences or best practises.

POC is looking forward to seeing you in Hamburg or online!

The EAACI Patients Organisation Committee (POC) aims to be the patients reference body in the field of Allergology, representing patients of all nationalities across the globe, and promoting patient-centred healthcare in the specialty. The POC is currently comprised of 33 members which are patient support organizations working at the local, national, regional and international levels. The committee aims to build cross-sector alliances and working collaboratively with EAACI members, policy makers, and industry representatives. Activities undertaken by the POC include:

• Providing EAACI with the patient and carer real life experience of living with allergic diseases and asthma
• Engaging and contributing patient perspectives through participation in EAACI Sections, Conferences, Interest Groups, Working Groups, Committees, and Task Forces
• Building cross-sector alliances and promoting collaboration between patient group members and other EAACI members, policy makers, and industry representatives with specific focus on priorities that are common across geographies
• Bringing patient organisations from around the world to discuss, align and promote patient-organisation led education, advocacy and research initiatives
• Building broad based awareness of the burden of allergic diseases and asthma

The POC meets 4 to 6 times per year virtually and pre-covid, would meet in person at one EAACI conference per year and focused meetings such as FAAM and PAAM. These sessions provide the forum to discuss common issues, align on actions and share best practices. Most recently, they have provided a good platform to discuss international efforts at CODEX and engage in global research priorities.

EAACI POC is truly international in its focus with representation from 30 countries listed at this link. With this representation, it is well positioned to work with EAACI in support of patient needs on a global scale.