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.

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.

A call on research and innovation's actions will be launched on July 18, 2019. IMI projects aim at accelerating the medicines development process, generating new scientific insights, and developing resources for open use by the research community. The topics of this call are related to integrated research platforms, digital clinical trials, immune-mediated diseases, medicines safety, brain disorders, blockchain, antimicrobial resistance.

FInd more information on the following link.

The International Summer School on Rare Disease Registries and FAIRification of Data is a part of a series of training activities proposed by the European Joint Programme on Rare Diseases (EJP RD) which will take place at the Istituto Superiore di Sanità, Rome, Italy. The first module “Rare Disease Registries” starts on September 23 till September 25, 2019. The second module “FAIRification of data”, starts on September 26 till September 27, 2019.

Onlne registration deadline is June 20th, 2019.

Find more information on the following link.

The European Joint Programme on Rare Diseases (EJP RD), which is the successor of E-Rare launches the Joint Transnational Call 2019. The call will  open officially in December. This year projects should focus on accelerated diagnosis and/or exploration of disease progression and mechanisms of rare diseases. More info under www.ejprarediseases.org

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