EJP RD HIGHLIGHTS
EJP RD Internal Call for Proposals – Clinical Trials Methodology Demonstration Projects
The Clinical Trials Methodology Demonstration Projects Call is aimed 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 call is now closed for submission of 1-pager letters of interest.
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. Collection date of 2 June is cancelled due to the COVID-19 outbreak. Next collection date is 1 Sept. 2020.
Biomedical Research Training Workshop Week. Implementing Biomedical Research Projects
11 – 14 May 2020. This workshop will be ONLINE, 14:00 – 17:30 each day. Registration is OPEN, deadline is 27 April. Preliminary program – Virtual version – is available. Targeted audience: Researchers, clinicians, and biobankers. The workshop and registration are free of charge.
International course: Training on strategies to foster solutions of undiagnosed rare disease cases
27 – 29 April 2020. The training course will be ONLINE. Final program – Virtual version – is available. Registration is closed. It will provide participants (30 max) with useful examples for the resolution of undiagnosed cases. It is free of charge.
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!
EJP RD Internal call – ERN RD training and support program
The EJP RD Internal – ERN RD training and support program Fellowship calls are officially closed.
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
COVID-19 Public Health Emergency of International Concern (PHEIC)
Global research and innovation forum: towards a research roadmap The World Health Organization (WHO) has recently developed and launched this official document to Powering research to control the epidemic. Broad consensus on the need for research to focus on actions that can save lives now. To ensure that those affected are promptly diagnosed and receive Read more about COVID-19 Public Health Emergency of International Concern (PHEIC)[…]
Commission launches “COVID-19 Clinical Management Support System”
The European Commission launched the “COVID-19 Clinical Management Support System” with the aim to support clinicians in hospitals that are currently facing the coronavirus emergency all over Europe. Based on the experience with the European Reference Networks, the initiative will help to create rapid connections across Europe among the hospitals indicated by the Member States as Read more about Commission launches “COVID-19 Clinical Management Support System”[…]
Implications of coronavirus disease (COVID-19) on methodological aspects of ongoing clinical trials
EMA has developed this guidance covering actions that sponsors of ongoing clinical trials affected by the coronavirus disease (COVID-19) pandemic should take to help ensure the integrity of their studies and interpretation of study results while safeguarding the safety of trial participants as a first priority. This complements the good clinical practice guidance on how sponsors should adjust the management of clinical Read more about Implications of coronavirus disease (COVID-19) on methodological aspects of ongoing clinical trials[…]
EURO-NMD & COVID-19
EURO-NMD has taken some important actions in response to the Covid-19 crisis. In particular, two online surveys have been developed, a Covid-19 patient survey with few simple questions about the relationship between those people with NMDs and the virus, and a Covid-19 hospital one targeting clinicians. Both surveys can be found on the homepage at Read more about EURO-NMD & COVID-19[…]
Jazz4Rare 2020 by Foundation of Borys the Hero
Jazz4Rare 2020, a unique jazz concert took place in Emigration Museum in Gdynia on Rare Disease Day. Concert was positive kind of trial of building awareness event build on sensory experience thru jazz music & vocal. The event gather almost 300 visitors who spent 2 hours on listening and feeling jazz states of rareness served Read more about Jazz4Rare 2020 by Foundation of Borys the Hero[…]
European Conference on Rare Diseases & Orphan Products 2020 moves online
In the context of the current COVID-19 pandemic and in line with WHO guidelines, the upcoming European Conference on Rare Diseases & Orphan Products (ECRD) will now take place online on 14-16 May. The health and safety of all stakeholders participating in ECRD, including people living with a rare disease and their carers, is our Read more about European Conference on Rare Diseases & Orphan Products 2020 moves online[…]
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[…]