North American edition of the RE(ACT) Congress 2019 to be held at the Sheraton Center Toronto Hotel in Toronto, Canada, from May 8-11 2019. This 5th edition, the first to be held in North America will include sessions on clinical trials and registries, generalizable rare disease therapeutic approaches, gene editing, cell & gene therapy, stem cells, genetically modified cell therapies/clinical applications of gene therapies indigenous populations and rare diseases, and patient-focused drug development. REGISTER NOW! 

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 Open Call Menu link.

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.

More information, HERE.

News & Media

The International Prize for Scientific Research Arrigo Recordati is open to researchers of all nationalities studying rare disorders. The deadline to submit pre-proposals is December 15, 2018. The winner project will be announced during an Award Ceremony at the 2019 Society for the Study if...
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...

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E-Rare 2012 - Created by Toussaint Biger