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.

News & Media

The second Stakeholder Meeting of INFRAFRONTIER, the European Research Infrastructure for phenotyping and archiving of model mammalian genomes, will be jointly organized with the International Mouse Phenotyping Consortium (IMPC). Thematic focus of the meeting is on advancing Rare...
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...
  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...
Apply by October 31st, 2018 for Corbel Open Call ! 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. Selected projects will gain unprecedented opportunities to utilise a wide...
Dear Colleagues, As you may have heard, the new General Data Protection Regulation (GDPR) comes into effect May 25, 2018. Your privacy comes first!   As you are part of E-Rare community and has expressed interest in our calls, conferences and rare diseases related news OR registered into our "...
The European Commission's Joint Research Centre (DG JRC), together with DG SANTE, is developing the EU Rare Diseases Registries Platform. The Platform aims to cope with the enormous fragmentation of RD data contained in RD patient registries across Europe by promoting EU-level standards for data...
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare...
  The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare...
Orphanet (www.orpha.net) is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all...
ECRIN has launched a call for pilot clinical studies to receive trial management support from the Paediatric Clinical Research Infrastructure Network (PedCRIN) project. The goal is to support the multinational extension of paediatric studies on medicinal products having already secured funding in...

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