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.

EATRIS Services for E-RARE 3 call

EATRIS Services for E-RARE 3 call

EATRIS ERIC, the European Infrastructure for Translational Medicine, specialises in advancing medicines safely into clinical development. With over 75 leading academic translational research institutions across Europe, EATRIS can find your partner with specialised facilities and long-standing expertise in an array of disciplines, including:

  • In vivo imaging-enabled drug development, supporting pre-clinical and clinical assessment of target expression, modulation and internalisation, drug pharmacokinetics and biodistribution, normal organ uptake, optimisation of drug dose & scheduling, and assessment of inter-patient variation;
  • Drug (re-) formulation expertise, access to an array of drug delivery technologies;
  • Access to a wide array of specialised pre-clinical models, as well as clinical expertise and patient cohorts for many rare diseases.

Please email Florence Bietrix for more information [florencebietrix[at]eatris.eu] or check EATRIS website

E-Rare 2012 - Created by Toussaint Biger