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

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.

9th edition International Prize for Scientific Research Arrigo Recordati

9th edition International Prize for Scientific Research Arrigo Recordati

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 Inborn Errors of Metabolism Congress (2019 SSIEM, Rotterdam, 2nd--6th September) and the research grant is of € 100,000.

For more information, visit the following website.

E-Rare 2012 - Created by Toussaint Biger