EJP RD HIGHLIGHTS
EJP RD – Joint Transnational Call 2020 (JTC2020)
The EJP RD JTC2020 is online! Topic is: PRE-CLINICAL RESEARCH TO DEVELOP EFFECTIVE THERAPIES FOR RARE DISEASES. There will be a two-stage submission procedure for joint applications: pre-proposals and full proposals. The deadline for registration and submission of pre-proposals is the 18th of February 2020.
EJP RD Internal Call for Proposals – Clinical Trials Methodology Demonstration Projects
The Clinical Trials Methodology Demonstration Projects Call is OPEN. It aims to show the usability and capability of the innovative statistical methodologies for clinical trials in rare diseases, which have not been demonstrated on existing data for specific rare disease clinical trials yet.
Networking Support Scheme
Networking Support Scheme (NSS) is open! Health care professionals, researchers and patient advocacy organizations can apply to organize workshops or conferences on rare diseases and rare cancers. The focus of these events should be research results and innovative solutions. Open on a continuous basis.
EJP RD – RDR Challenges Call – NETWORKING EVENT ANNOUNCEMENT
The registration for the RDR Challenges Networking Event is open! Deadline is 31 January 2020, 100 participants max. Academia, clinical/public health sector, SMEs, and rare disease patient representatives can apply. The aim is facilitate collaborations between stakeholders that will apply to the call.
RE(ACT) Congress and IRDiRC Conference. 11-14 MARCH 2020, berlin, Germany
REGISTRATION: SPECIAL RATES FOR EJP RD & IRDiRC MEMBERS! Topics will be from “Methodologies to assess the effect of diagnosis and therapies on RD patients” to “Patient engagement in drug development and clinical trial”.
Funded Projects. Results of EJP RD Joint Transnational Call (JTC2019)
The list of first EJP RD – JTC2019 funded projects is ONLINE! Title of this call was “Research projects to accelerate diagnosis and/or explore disease progression and mechanisms of rare diseases”.
International course: Training on strategies to foster solutions of undiagnosed rare disease cases
27 – 29 April 2020. Istituto Superiore di Sanità, Rome, Italy Registration is open, deadline 26 Jan! The course will provide participants (30 max) with useful examples for the resolution of undiagnosed cases. It is free of charge.
“Multidisciplinary Research Projects on Personalised Medicine – Pre-/Clinical research, Big Data and ICT, Implementation and User’s Perspective” Deadline for pre-proposal submission is: 5 March 2020 (17:00 CET) ERA PerMed is an ERA-NET Cofund, supported by 32 partners of 23 countries and cofunded by the European Commission (EC). To align national research strategies, promote excellence, reinforce the Read more about ERA Per Med Call: JOINT TRANSNATIONAL CALL 2020[…]
The H-CARE Pilot Survey, the new Rare Barometer survey designed to provide a detailed understanding of patients’ experiences of healthcare, is now live! The long term goal of the H-CARE Survey is to develop a centralised patient feedback mechanism across the 8000+ rare and complex diseases, and across the 24 European Reference Networks (ERNs). In Read more about New Rare Barometer survey needs your help![…]
JPND Call: NOVEL IMAGING AND BRAIN STIMULATION METHODS AND TECHNOLOGIES RELATED TO NEURODEGENERATIVE DISEASES
On January 7, 2020, the EU Joint Programme – Neurodegenerative Disease Research (JPND) initiative launched a transnational call for novel imaging and brain stimulation methods and technologies related to neurodegenerative diseases. Neurodegenerative diseases are debilitating and largely untreatable conditions that are strongly linked with age. Worldwide, there are estimated to be 47 million people suffering from Read more about JPND Call: NOVEL IMAGING AND BRAIN STIMULATION METHODS AND TECHNOLOGIES RELATED TO NEURODEGENERATIVE DISEASES[…]
EPTRI (European Paediatric Translational Research Infrastructure) is an EU funded project aimed to design the framework for a new infrastructure dedicated to paediatric research that will work to accelerate the paediatric drug development processes from medicines discovery, biomarkers identification and preclinical research to developmental pharmacology, age tailored formulations and medical devices. The final goal is Read more about EPTRI Open Meeting: Call for abstract[…]
The aim of this survey is to gain the views and experiences of people living with rare endocrine disorders about the research they think should be prioritized related to their disease within European countries. This initiative is taken in order to provide a better understanding of patient needs and challenges in this area. This questionnaire Read more about Endo-ERN – European survey about Patients´ unmet need in medical research[…]
Congrats to our coordinator Dr. Daria Julkowska for the EURORDIS Black Pearl 2020 – European Rare Disease Leadership Award
Congratulations to our coordinator, Dr. Daria Julkowska, from the EJP RD community, we are very happy for you! Dr. Julkowska won the EURORDIS Black Pearl 2020 – European Rare Disease Leadership Award for her “outstanding leadership and dedication shown to the rare disease community and the positive impact she has had on rare disease research Read more about Congrats to our coordinator Dr. Daria Julkowska for the EURORDIS Black Pearl 2020 – European Rare Disease Leadership Award[…]
A key article from Guido Rasi, EMA’s Executive Director, Sabine Straus, the chair of EMA’s safety committee (PRAC) and Peter Arlett, the Agency’s Head of Pharmacovigilance and Epidemiology, published in Clinical Pharmacology and Therapeutics: Pharmacovigilance 2030. In 2030, regulators will dedicate significantly more time to engaging with patients and healthcare professionals and thus ensuring that the Read more about How will pharmacovigilance look in 2030?[…]
The journey of a medicine assessed by EMA The European Medicines Agency has just published an interactive timeline describing the journey of a medicine for human use authorised through EMA, from initial research to discussions on patient access to medicines across the EU. This tool is based on a booklet published earlier this year, and allows the user to Read more about From Lab to Patient[…]
This is a video recently published by ERN TransplantChild to promote the collaboration between pediatric European Reference Networks (ERNs). Crosstalk among ERNs is an important task that could help improving healthcare for rare diseases. Therefore, it is necessary that the networks start collaborating and working together in their overlapping areas. We can “work together for Read more about Paediatric ERNs Crosslinks: The story of Íñigo[…]
Photo submissions for the Photo Award 2020 are now open, until 16th January 2020. The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages and diseases. Read more about EURORDIS Photo Award 2020[…]