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.

Consultation on guidelines on Good Clinical Practice for Advanced Therapy Medicinal Products

Consultation on guidelines on Good Clinical Practice for Advanced Therapy Medicinal Products

The European Commission is launching an online targeted public consultation on the draft guidelines on good clinical practice for Advanced Therapy Medicinal Products (ATMPs) addressed particularly to small and medium-sized enterprises (SMEs), academia, hospitals and patient organisations.

The Commission has to draw up guidelines on good clinical practice specific to advanced therapy medicinal products. The document will focus on ATMP specificities only and will apply to the GCP Guidelines of The International Council for Harmonisation of Technical Requirements for Pharmaceuticals for Human Use (ICH).

The comments are invited to be sent by 31 October 2018. Responses should preferably be sent to sante-pharmaceuticals-B5(at)ec.europa.eu.

Find more information here.

E-Rare 2012 - Created by Toussaint Biger