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[…]

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[…]

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[…]