You, the patient, are ultimately the reason for the existence of ImmUniverse and all the efforts undertaken by our international team of experts. Living with atopic dermatitis or ulcerative colitis every single day can be a challenge. It can affect all aspects of your life, may require you to take daily doses of medicines or even undergo surgery. It can send you onto an emotional rollercoaster and you might wish for new treatments to ease this burden.
ImmUniverse aims to improve the understanding of each individual patient’s needs and to develop more effective and personalised treatment options through the use of non-invasive technologies. In the long run, ImmUniverse also aims to improve the understanding, management and monitoring of other immune-mediated diseases than atopic dermatitis and ulcerative colitis.
In order to better understand your needs, the ImmUniverse consortium of 26 partners includes three European patient associations that make your experiences and concerns their daily business.
- EFA – European Federation of Allergy and Airways Diseases Patients’ Associations
EFA is the voice of allergy, asthma and chronic obstructive pulmonary disease (COPD) patients in Europe and is actively involved in the decisions impacting their health. EFA’s vision is for all people with allergy, asthma and COPD in Europe to live uncompromised lives, have the right and access to the best quality care, participate in their care, and to have a safe environment.
In the ImmUniverse project, EFA will ensure representation of atopic eczema patients, including their perspective. EFA is aware that atopic eczema patients need help with the utmost urgency. In the EFA recent survey report “Itching for Life: Quality of Life and costs for people living with severe atopic eczema in Europe“ patients expressed a real need for treatment improvements, but also better support to accessing care.
EFA decided to get involved in ImmUniverse to ensure an efficient dialogue and a continuous focus on patients’ needs throughout the project. Together with the other partners, EFA will establish a Patient Input Platform, composed of patients with atopic dermatitis and ulcerative colitis, ensuring a patient-centric approach across all research activities. The patient experts will be advising on clinical research procedures, supporting in the interpretation of research outcomes and assisting in disseminating them.
- EFCCA – European Federation of Crohn’s & Ulcerative Colitis Associations
EFCCA is an international not-for-profit organisation, an umbrella organisation representing 41 national Crohn’s and ulcerative colitis (IBD) patient associations. It is an organisation of people united in their commitment to improve the life of the over 10 million people living with IBD worldwide - 3.4 million in Europe alone - and to give them a louder voice and more visibility. EFCCA’s mission is to improve the life of people with Crohn’s disease and ulcerative colitis. To this end, the organisation involves and empowers patients in their daily fight with IBD. IBD members are regularly invited to participate in any activity that requires direct feedback and insights, such as the ImmUniverse project. EFCCA can count on a list of expert patients that are able to provide input and have a say on several topics such as clinical trials, research, PROs and many others.
EFCCA agreed on being part of the project in order to ensure the direct involvement of patients. The implementation of the patient input platform, together with EFA, will also give the opportunity for the exchange of best practice and capacity building activities.
- EPF – European Patients’ Forum
The European Patients’ Forum (EPF) is an umbrella organisation that works with patients’ groups in public health and health advocacy across Europe. Our members represent specific chronic disease groups at EU level or are national coalitions of patients.
Our Vision is that all patients with chronic conditions in Europe have access to high-quality, patient-centred health and related care.
Our Mission is to be the collective influential patient voice in European health and related policies and a driving force to advance patient empowerment and equitable patient access to care in Europe.
EPF helps to empower patients’ organisations through educational seminars, policy initiatives and projects. We coordinate best practice exchanges between patient organisations at European and national levels. Our programmes also help to strengthen their organisational and advocacy capacity.