Tackling rare diseases a ‘European success story’

Speaking in Brussels, Yann Le Cam, CEO of Eurordis, the European organisation for rare diseases, said, “We have gone from near ignorance to the recognition of rare diseases as a public health priority in Europe.” He added, “The landscape has changed drastically; expertise and innovative technologies that can potentially benefit people living with a rare Read more about Tackling rare diseases a ‘European success story’[…]

United Nations human rights body stresses the need to address rare diseases within Universal Health Coverage

The United Nations Office of the High Commissioner for Human Rights (OHCHR) has made reference to persons living with a rare disease within its recently published annual report to the UN Economic and Social Council (ECOSOC). The 2019 report focuses on the topic of Universal Health Coverage (UHC), and looks at how the human rights framework Read more about United Nations human rights body stresses the need to address rare diseases within Universal Health Coverage[…]

10th European Conference on Rare Diseases & Orphan Products (ECRD2020)

European Joint Programme on Rare Diseases serves as official partners for the 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020) taking place at the Stockholmsmässan Congress Center in Stockholm, Sweden on 15 – 16 May 2020. The overarching theme for the conference is: The rare disease patient journey in 2030. More info Read more about 10th European Conference on Rare Diseases & Orphan Products (ECRD2020)[…]

Patient Engagement Open Forum

On September 18th and 19th in Brussels, PARADIGM, PFMD and EUPATI will organise the Patient Engagement Open Forum.  The Forum aims to provide a holistic perspective of patient engagement, the landscape and actors, and foster collaboration and co-creation while breaking down fragmentation and silos that are often present in patient engagement work. The agenda of the two days Read more about Patient Engagement Open Forum[…]

Daria Julkowska new interview on the EJP RD project!

“European Initiative Targets Diagnosis, Treatment of Rare Diseases” article has just been released on ALS NEWS Today! Check it out! <<A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while also accelerating the development of treatments for the 95% of such Read more about Daria Julkowska new interview on the EJP RD project![…]

EPTRI EU STAKEHOLDERS ROUNDTABLE SUMMARY REPORT RELEASED!

Representatives from paediatric networks, research infrastructures (RIs), European Reference Networks (ERNs), charities, patients’ associations, Young Persons Advisory Groups (YPAGs), companies’ federations, Governments and regulatory Authorities had a very productive discussion during the stakeholders roundtable held in the framework of the 3rd General Assembly of EPTRI (European Paediatric Translational Research Infrastructure) in Madrid, Spain, on March Read more about EPTRI EU STAKEHOLDERS ROUNDTABLE SUMMARY REPORT RELEASED![…]

EFPIA, EATRIS, ELIXIR, BBMRI, ECRIN statement on the role of research infrastructures to boost patient-centred research and innovation in Europe

The European Union has invested heavily in health research. Since the early 2000’s it supported the creation of European Research Infrastructures (pan-European organisations devoted to health research) like BBMRI, EATRIS, ECRIN, ELIXIR, and funded the Innovative Medicines Initiative (IMI), the world’s largest public private partnership (PPP) in health. The combination of PPPs such as the IMI and European infrastructures Read more about EFPIA, EATRIS, ELIXIR, BBMRI, ECRIN statement on the role of research infrastructures to boost patient-centred research and innovation in Europe[…]

UNO SGUARDO RARO (A Rare Glance)

The rare disease international film festival is the first and only film festival on rare diseases in Europe. It collects and promotes the best video works on rare diseases and social inclusion through an international competition and works with public and private partners, both national and international, the rare diseases community, disability advocates, entertainment and Read more about UNO SGUARDO RARO (A Rare Glance)[…]

RE(ACT) Congress 2020 and IRDiRC Conference, Berlin, Germany, 11th -14th March 2020

SAVE THE DATE!!! The BLACKSWAN Foundation and IRDiRC, the International Rare Diseases Research Consortium, are glad to announce the RE(ACT) Congress 2020 and IRDiRC Conference, Berlin, Germany, 11th-14th March 2020. This joint event will continue the RE(ACT) Congress series (6th edition) and IRDiRC Conference series (4th edition). It aims to bring together scientific leaders and experts and young scientists from a Read more about RE(ACT) Congress 2020 and IRDiRC Conference, Berlin, Germany, 11th -14th March 2020[…]