28 February 2019 will be the twelfth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities. The theme for Rare Disease Day 2019 is 'Bridging health and social care'.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

For more information, check this website.

 

PARADIGM, a collaborative IMI project that aims to make meaningful patient engagement in medicines development a reality. 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. Share your opinion and experience on patient engagement NOW! Learn more HERE

 

The CORBEL Open Call invites researchers to apply to access technologies and services from more than 20 facilities from 10 different research infrastructures across Europe.
Learn more HERE

 

The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. See the publication HERE.

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