March 24, 2017
Rare Lives project wants to give the 30 million people living with a rare disease in Europe the visibility and strength, raising awareness and attention of the citizenship on rare diseases through the construction of a network which combines the experiences of those living the condition of rare patient and those who are not. Take a look on the journal!
March 15, 2017
After the kick off conference held last 9th and 10th March in Vilnius, a set of dissemination material (flyer, brochure and video) have been prepared by the European Commission with the aim of rising awareness on the meaning, objectives and expected outcomes of the 24 ERNs.
March 11, 2017
The first 24 ERNs approved last December were awarded in a two-day conference held 9th-10th March in Vilnius organized by the European Commission and the Maltese Presidency of the Council and hosted by the Ministry of Health of Lithuania with more than 600 participants. The ERNs cover 24 clinical areas and bring together more than 313 hospitals and almost 1000 healthcare units of expertise across 25 EU countries and Norway. One of the approved networks has been EuroBloodNet, the ERN on Rare Hematological Diseases, resulting from joint efforts of the European Hematology Asssociation (EHA), and ENERCA.
March 10, 2017
Orphanet was established in France by the INSERM (French National Institute for Health and Medical Research) in 1997 with the aim to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Celebrating its 20th anniversary, Orphanet has enveiled its new website with an easier navigation and reading and searching options and responsive design. Check it out in www.orphanet.net !
February 24, 2017
The EURORDIS Awards & Black Pearl Evening is held every year to mark the occasion of Rare Disease Day and recognize outstanding patient advocates and organisations, volunteers, scientists, companies, media and policy makers who have contributed to reduce the impact of rare diseases on people's lives. This year, the winners of the EURORDIS Awards 2017 were announced at Black Pearl ceremony in Brussels on February 21st by Vytenis Andriukaitis, European Commissioner for Health and Food Safety.
January 31, 2017
As every year, this 28th February Rare Disease Day will be held around the world with the aim of raising global awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The Rare Disease Day 2017 theme is research and the slogan is “With research, possibilities are limitless”. Get involved with Rare Disease Day 2017!
November 26, 2016
e-ENERCA has come to an end reaching its main goal, to provide professionals and patients with e-Health tools to assure the same level of RA services across Europe, independently from the country of practise and the origin of the patient. e-ENERCA also aimed to promote the recognition of Centres of expertise by the national health authorities necessary for its promotion and its recognition as a European Reference Network (ERN) on RAand to assess the implementation of the new Directive 2011/24/EU. Although it has not been easy the three platforms foreseen for eRegistry, Telemedicine and eLearning have been developed and implemented in ENERCA website. If you want to know more download the e-ENERCA Final report!
November 7, 2016
The creation of this cluster is the latest step in EMA’s and FDA’s wider objective to expand and reinforce international collaboration. The currently existing EMA/FDA clusters discuss issues related to patient engagement, biosimilars, orphan medicines, medicines to treat cancer, medicines for children, and pharmacovigilance, among other topics.
October 3, 2016
Bernat is a young boy who suffers from a grave case of the rare hemolytic disease known as Pyruvate Kinase Deficiency. Little Bernat has a wonderful website to inform people about PK Deficiency and to raise global awareness about the little things that people can do to help children like Bernat.
September 15, 2016
EURORDIS has developed the Rare Barometer Voices, a new interactive survey panel available in 23 languages that collects the experiences of people that are living with or affected by a rare disease. The first stage of the study is now open!