Organizations

The Patient Focused Medicines Development (PFMD) group, established in 2015, is an independent multinational coalition, managed in collaboration with The Synergist. Its goal is to bring together initiatives and best practices that integrate the voice of the patient throughout the lifecycle of medicines development, thereby speeding up the creation and implementation of an effective, globally standardized framework. PFMD seeks to have a balanced representation of stakeholders to ensure transparency, inclusiveness, and credibility. Stakeholders include patients and patient organizations across diverse areas of health and industry. We also intend to invite regulators, payers and other professional organizations to the global group to ensure diversity of perspectives.

The Patvocates Network is run by activists with decades of experience in patient advocacy. We provide valuable advice, insights, experiences and connections in supporting patient engagement strategy development, stakeholder identification, system readiness and project implementation in patient organisations and other stakeholders engaging with them - regulators, ethics committees, academic institutions and organisations and the pharmaceutical industry. We focus on strengthening patient advocates activities on multiple levels: supporting patients and peers, influencing health policy, and collaborating with stakeholders in research and development. The Patvocates Network is registered in Germany and acting mainly on a European level.The Patvocates Network is both a patient-driven think tank and patient-focused consultancy in the triangle of patient advocacy, health policy and social media.

The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment, and care. It also acts as a platform for patient organisations – concentrating on educating, connecting, and supporting patient group leaders. The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (116 patient organisations in 86 countries), the MPN Advocates Network, the CLL Advocates Network and the Acute Leukemia Advocates Network (ALAN).

The European Patients’ Academy (EUPATI) is a pan-European project implemented as a public-private partnership by a collaborative multi-stakeholder consortium from the pharmaceutical industry, academia, not-for-profit, and patient organisations. EUPATI was started, developed and implemented as a flagship project of the Innovative Medicines Initiative (http://www.imi.europa.eu/), and continues to be led by the European Patients’ Forum. EUPATI has already trained over 150 patient experts on medicines development, clinical trials, medicines regulations, health technology assessment. Additionally, EUPATI provides an online Toolbox on Medicine Development which has been used by more than 3.4 million individuals, and coordinates a network of national platforms in 21 countries. EUPATI focuses on education and training to increase the capacity and capability of patients to understand and contribute to medicines research and development and also improve the availability of objective, reliable, patient-friendly information for the public.Patient involvement in R&D, strengthened by EUPATI's training and communication activities and informational resources, will make sure that patients priorities and needs are at the center in all research and development work on safe and effective new treatments, ultimately improving patient outcomes.

The CML Advocates Network is an active network specifically for leaders of Chronic Myeloid Leukemia (CML) patient groups, connecting 120 patient organisations in 90 countries on all continents. It was set-up and is run by CML patients and carers. Its aim is to facilitate and support best practice sharing among patient advocates across the world. The idea to form the CML Advocates Network was first discussed in 2005 during the 4th International "New Horizons in Cancer" conference in Dublin for CML & GIST patient advocacy groups. Since their initiation in 2002, the "New Horizons" annual conferences have become a key networking event and a platform for best practice and knowledge sharing for CML and GIST patient groups from all five continents. Presentations by expert clinicians, medical professionals and patient group organizers enable the sharing of the most up to date clinical information, of best practice in patient advocacy as well as of hands-on experience, e.g. and on how to run patient advocacy organisations. The CML Advocates Network website was then set up in 2007 to keep the international networking going also after the annual meetings, as well as to bridge geographical distances between patient leaders. The network was initiated by four patient groups from Germany, UK, Czech Republic and Israel, facilitated by an unrestricted grant from Novartis. It is run independently by CML patients and hosted by the patient-run Leukemia Patient Advocates Foundation. The website has turned out to be a very powerful tool to support patient leaders around the world, to provide a knowledge base on CML advocacy, and to facilitate best practice sharing. We welcome members from all CML patient group organizations throughout the world to become part of the CML Advocates Network!