European Patient Advocacy Institute

??????????????????????????: ??????????????-?????? ?????????????? ???? ?????????????? ?????????????????????? ???????????????? ???? ???????????????????? ?????????????? ?????????????????????? ???? ???????????????? ? In research, #patientengagement is essential, but many researchers face challenges in finding knowledgeable patient partners to guide their research. At the same time, patient organisations often struggle to connect with #research groups planning key projects early. This gap often leads to missed opportunities for timely and structured #patientinvolvement, highlighting the need for a systematic solution. A patient-led consortium, coordinated by the European Patient Advocacy Institute (EPAI), and supported by Acute Leukemia Advocates Network (ALAN), Childhood Cancer International - Europe, Myeloma Patients Europe (MPE), and Patvocates, is developing an innovative Matchmaking Platform to address this issue. This project follows three years of groundwork, including strategic recommendations and a landscape analysis. While existing services offer valuable disease-specific insights, there remains potential for a unified, accessible system that better connects patients and researchers across a broader range of conditions. Thanks to non-commercial funding from the German Federal Ministry of Education and Research (Bundesministerium für Bildung und Forschung) within the National Decade Against Cancer #XgegenKrebs and the philanthropic Rising Tide Foundation for Clinical Cancer Research (RTFCCR), Rising Tide Group, the platform will be developed with a pilot launch in #cancer and #haematology by the end of 2025. The platform will then expand to other disease areas. The platform will use a competency matrix for patient matching developed by EUPATI Germany and later adopted by ?????? ????????????????, a semi-automated expert search service, and tools for tracking impact and quality of the engagement. A true patient-led, co-created effort, driven by the collaboration of key partners and stakeholders from the patient community, its development is open to any collaboration along the project’s lifetime. The European Patient Advocacy Institute invites patient organisations, researchers, pharmaceutical companies and other stakeholders to join us in this initiative to enhance patient involvement in research. For more information, contact the Director of the Matchmaking Platform Eglys Gonzalez at [email protected] . For the full announcement, please see here: https://lnkd.in/dFe-BRHe #PatientInvolvement #Research #HealthcareInnovation #PatientCentric #Collaboration #EPAI

What a memorable #EHA2024 Hybrid Congress in Madrid last week! ?? This year’s congress was the largest ever, with over 15.500 participating on-site + around 3.000 virtually. Leading European and global voices in #hematology gathered to discuss key issues impacting patient treatment and outcomes. Organised by the European Hematology Association (EHA), it showcased the latest #scientificresearch and developments advancing the field of hematology. Over the past decade, EHA has worked closely with the patient communities in malignant and non-malignant hematology to involve them and the EHA PAC by including patient co-chairs, speakers and EHA-patient joint symposia in this scientific congress. Team members from the European Patient Advocacy Institute (EPAI) and Patvocates were out in full force, actively participating in sessions, presentations, and more throughout the June 13-16 event. Participants from the PNH Advocate Development Programme (ADP), the PNH Global Alliance’s first disease-specific training program for patient advocates in paroxysmal nocturnal hemoglobinuria, were trained on #patientadvocacy in action and in science. The programme is coordinated by our Patvocates team and led by Alba Ubide, our Head of NGO Services, with Eglys González-Marcano and Inés Ca?ada Carril. EPAI organised in-person training sessions for members of EHA’s Adolescent and Young Adults (AYA) patient advocacy training programme, which aims to further equip advocates to help address the specific needs of AYA patients & survivors affected by hematological diseases. Two young patient representatives have now been elected to the EHA’s AYA Task Force, Yunus Borowczak and Charles McGrath. Ana Amariutei, Linda Silva and Sally Batten were in action day and night to make this happen. Mercè Cases took to the stage for an insightful talk, titled “Use of PROs in hematology trials in Europe: Reality or just the exception?”, on how certain patient-reported outcome (PRO) measurements may be insufficient or not meaningful to understand patient reality on disease and treatment. Advocates now urge early patient community involvement during the development of trial protocols and PRO strategies for better outcomes. The WECAN #EuroACT project is underway to provide solid evidence. The last day of EHA2024 saw Ana Amariutei, speaking on behalf of patient advocate Ananda Plate, about a very sensitive topic too often overlooked by healthcare professionals: In her talk titled, “Patient perspective on fertility and family planning after cancer”, she covered information central to understanding post #cancer experiences of young patients touched by severe conditions, e.g. impact on #fertility and barriers to its conservation, and provided recommendations to hematologists, policy makers and industry. We extend our gratitude to the organisers EHA and the clinicians, researchers, societies, patient organisations and advocates that made it an unforgettable experience at EHA2024! ??

The WECAN Academy 2024 ???? ???? still has a few seats open for Patient Advocates seeking training- In both levels, SmartStart and Masterclass. From 11 to 14 July you can learn best practices and reach key insights in the three knowledge pillars: Advocacy Tools & Skills, Research & Data, and Healthcare Systems, Policy, & Access. The event will take place close to Barcelona in a well organised and perfectly suitable environment allowing in-depth training, fruitful networking and lots of fun! Don’t miss out- REACH OUT to the WECAN Umbrella Organisations or the WECAN Secretariat via [email protected] (https://lnkd.in/eN469aAc) if you are interested to be nominated for this extraordinary learning opportunity! Take a look at the Recap of the WECAN Academy 2023 here: https://lnkd.in/evMAn_4D #wecanadvocate

A new opportunity is waiting for YOU to take it! European Patient Advocacy Institute is looking for an experienced Policy Officer to join the energetic team. Please see full info on the website: https://lnkd.in/dgCxvhBx

Looking for new endevours? Want to join a vibrant team? Take a look at this job offer: https://lnkd.in/eGEtMZfw

Many blood diseases occur in later phases of life, but in each of them, there are also many young patients who need to deal with these conditions, symptoms and therapies. These patients have specific needs in terms of treatment and research, being able to perform at school or work, fertility, survivorship as well as sexual and mental health. The @European Patient Advocacy Institute Is currently running an exciting training programme of the European Hematology Association (EHA) for adolescent and young adults (AYA) patient advocates. This weekend, we had our first meeting with 15 young patient advocates from CML Advocates Network, MPN Advocates Network , Acute Leukemia Advocates Network, CLL Advocates Network Myeloma Patients Europe (MPE), ITP Support Association, European Sickle Cell Federation (ESCF) and the PNH Global Alliance. The objective is to strengthen patient advocacy groups to better address the specific needs of young patients and survivors affected by different hematological diseases.The training aims to equip our trainees with the essential knowledge and capabilities needed for impactful advocacy and foster the collaboration with the EHA AYA Taskforce. The training programme is designed as a hybrid model of in-person and virtual sessions. Yesterday we had our first in-person meeting where we jointly identified key unmet needs of AYA patients in blood diseases, and brainstormed about potential advocacy actions that could address those. We also held a training about patient advocacy and using evidence, and had young hematologists presenting about malignant and non-malignant blood diseases. What an amazing group of young patient advocates. They will meet all of them again in two virtual sessions and then face to face during the EHA congress to do further trainings and poster walks! Thank you Ana Amariutei for coordinating this great programme, and Ananda Plate, Jan Geissler and Ana Amariutei as faculty!