EJP RD HIGHLIGHTS
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. The deadline for submission is 15 of March 2020.
EJP RD Internal call – ERN RD training and support program
The Research Mobility Fellowship call is OPEN, deadline is 16 March! The and Research Training Workshops call is now closed. Financial supports to PhD students and medical doctors working in ERN-member institutions for short scientific visits and/or to organize a 2-days workshop targeted to the ERNs needs are available.
EJP RD – Rare diseases research (RDR) Challenges Call
The #4 RDR Challenges for the call have been identified by the Industry partners and validated by the EJP RD are: a. Development of a non-invasive tool for measuring rare disease patient mobility in daily living; b. Delivery system for intranasal administration of biological drugs to neonates; c. Characterize Rare Bone Disorders (RBD) Mobility Challenges in Real World Setting; d. Pre-clinical assay to detect instability of microsatellite repeat expansions.
EJP RD – Networking Support Scheme (NSS) call
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. Next collection date for evaluation is June 2, 2020 at 14:00 (CET).
EJP RD – video
The NEW EJP RD video is available! What is the EJP RD? How EJP RD works? What kind of support EJP RD provides? How to contact EJP RD? Do you want to have all the answers? Then watch the video and subscribe to our NEW EJP RD YouTube channel!
Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects
NEW!!! 11 – 15 May 2020. Medical University of Graz – Graz, Austria. Registration is OPEN, deadline 2 April! Targeted audience: Researchers, clinicians, and biobankers. #4 travel fellowships are available, participants from EU-13 countries and patient representatives are encouraged to apply. The workshop and registration is free of charge.
International course: Training on strategies to foster solutions of undiagnosed rare disease cases
27 – 29 April 2020. Istituto Superiore di Sanità, Rome, Italy. Registration for the reserve list is still open, deadline 31 March! The course will provide participants (30 max) with useful examples for the resolution of undiagnosed cases. It is free of charge. The course will be online.
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”.
Latest news
Global Data Access for Solving Rare Disease
Rare but not uncommon “A more integrated system of gathering genomic data offers a solution with potential channels for return on investment” is the focus of the recent World Economic Forum project on Rare Diseases. Only 5% of the 475 million people with rare disease have a treatment. Given that 80% of these diseases have Read more about Global Data Access for Solving Rare Disease[…]
Towards the implementation of Personalised Medicine in Europe
ICPerMed and ERA PerMed published the joint statement “Towards the Implementation of Personalised Medicine in Europe – The Advantage of a European Partnership“. The statement stresses the need for establishing a European Partnership for Personalised Medicine. Already a lot has been achieved by a large number of international, pan-European, national as well as regional activities Read more about Towards the implementation of Personalised Medicine in Europe[…]
You are not alone as we all are one!
Indian Organisation for Rare Diseases (IORD)’s World Rare Disease Day-2020 That’s the takeaway from IORD conference on ‘Raising the Awareness: Prevention of Rare Diseases’ in Hyderabad, India that summed up the World Rare Disease Day-2020 event. Doctors, survivors, expert speakers, healthcare staff, patients’ organisations, RD patients, researchers, policymakers, RD volunteers, parents and students took part Read more about You are not alone as we all are one![…]
International Women Day: EJP RD supports Gender Equality
March 8th is the International Women Day, EJP RD is pleased to support the global campaign by sharing its support to all women. Gender equality is particularly important in science, where the gap is still present. In the past years, the EU has put in place formal regulations to ensure equal opportunities, however “female Read more about International Women Day: EJP RD supports Gender Equality[…]
Fund Generet Call 2020 for Belgium
The Fund wants to support research on rare diseases to better understand the processes (causes and mechanisms) underpinning rare diseases and/or to turn fundamental discoveries into better prevention, diagnosis or treatment of patients. This annual award of 1.000.000 € aims to catalyse the research agenda on rare diseases in Belgium and beyond. The amount Read more about Fund Generet Call 2020 for Belgium[…]
World Birth Defects Day
World Birth Defects Day (WBDD), observed on March 3 each year, unites people and organizations working in the field of birth defects, also known as congenital anomalies, congenital disorders or congenital conditions. There are many types of birth defects and this day recognizes collective voice in raising awareness for all birth defects. In 2010, the Read more about World Birth Defects Day[…]
EJP RD CELEBRATES RARE DISEASE DAY
This year the EJP RD is happy to join the international Rare Disease Day campaign by releasing its own first video! The video celebrates the relevance of the work done by the EJP RD consortium, the contribution of all EJP RD partners has been vital to the process of the development of rare disease ecosystem Read more about EJP RD CELEBRATES RARE DISEASE DAY[…]
Summer School: Ethics, Data & Innovation in the International Research Community
Collaborative research projects are a key aspect of international research, and the biomedical sciences. To respond to ethical issues raised by biomedical research, training on the ethics of research and innovation is crucial. This summer, Uppsala University’s Centre for Research Ethics & Bioethics (CRB) and the Biomedical Research Foundation of the Academy of Athens (BRFAA) are co-organising a Read more about Summer School: Ethics, Data & Innovation in the International Research Community[…]
Reframe Rare: A Rare Disease Day Policy Event
To mark the occasion of Rare Disease Day 2020, EURORDIS – Rare Diseases Europe holds a policy event at the European Parliament to “Reframe Rare” and discuss areas of action at EU level that can contribute to the integration of people living with a rare disease into society and improve their lives. The idea to Read more about Reframe Rare: A Rare Disease Day Policy Event[…]
EURORDIS Black Pearl Awards 2020
Today is the day: The 9th edition of the Eurordis Black Pearl Awards event is just a couple of hours away! The EURORDIS Black Pearl Awards is an annual awards ceremony which takes place in Brussels in February to launch the month of Rare Disease Day. Since 2012, EURORDIS-Rare Diseases Europe has organized this event to Read more about EURORDIS Black Pearl Awards 2020[…]