The European Joint Programme on Rare Diseases (EJP RD) has published the pre-announcement for the Joint Transnational Call 2020. This call is for proposals on "Pre-Clinical Research to Develop Effective Therapies for Rare Diseases".

For more information please visit the EJP RD website: http://www.ejprarediseases.org/index.php/joint-transnational-calls/

Rare Disease Day 2020 will be celebrated this year on Saturday the 29th of February - a fittingly rare date! Coordinated by EURORDIS in partnership with National Alliances, the aim is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. Lead-up events throughout the month will be organised by members of the rare disease community including patient organisations, healthcare professionals, researchers, and policymakers across 101 countries.

Rare diseases will affect 1 in 20 people in their lifetime, but their rarity often leads to delays in diagnosis, and means that information and treatment options can be limited. Rare Disease Day is an opportunity to strengthen international cooperation, vital for identifying and classifying these diseases, coordinating research, and providing access to treatment and support for patients, their families, and carers.

For more information, go to the Rare Disease Day 2020 website.

 

The European Rare Disease Models & Mechanisms Network (RDMM-Europe) has been established by Solve-RD – an EU-funded research project. The overall aim is to boost research in rare diseases, discover new disease-causing genes and obtain evidence for pathogenicity through functional validation.

For more information, visit the following website.

PARADIGM survey - share your opinion on patient engagement!

PARADIGM survey - share your opinion on patient engagement!

 

PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality, such as through better tools and recommendations was launch last March. 

 

The objective is to develop processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue with regulators and HTA bodies.

 

To reach outcomes that are truly useful, a survey on patient engagement is being deployed and you/ your respective relevant colleagues have been identified as the target audience, specifically involved in the three areas of relevance for this project. 

 

PARADIGM would like to ask you to take a few minutes to share your opinion and experience on patient engagement.

 

Better patient engagement in medicines development means better health outcomes for everyone and we can’t afford to continue to take a fragmented approach to deliver fragmented results. We will reach this shared goal much faster if we are focused, build consensus and work together starting with the most important priorities.

 

Your answers will directly help in understand your needs, preferences and expectations. Share your opinion now!

 

The survey can be accessed HERE

E-Rare 2012 - Created by Toussaint Biger