EJP RD is co-organising a meeting, along with the European Rare Disease Research Coordination and Support Action consortium (ERICA) and the Joint Research Centre (JRC), on Domain specific Common Data Elements (DCDEs) Curation targeted towards clinicians and people with a medical background to join. The online meeting will take place on December 9th, 2021 from 16.00 – 17.00 CET. In…
Rare Disease Ghana Initiative (RDGI), in partnership with Rare Diseases International (RDI), is organising the first African Summit on Rare Diseases with a view to promoting learning and exchange on the state of rare diseases in Africa. The Summit will bring together key stakeholders to discuss challenges and innovations shaping the rare disease landscape in…
The AKU Society, a UK-based charity, has launched a crowdfunding campaign to raise funds for « Leave No Patient Behind – A Global Black Bone Disease Registry » in order to gather information about alkaptonuria (AKU) patients around the world in one single place. Alkaptonuria, also known as AKU or Black Bone Disease, is an extremely rare genetic condition,…
The EURORDIS Photo Award is an opportunity to visually express what it means to live with a rare disease and to share your story with the rare disease community and beyond. The contest is open to all nationalities, ages, and diseases. Every year, hundreds of people from all around the world submit their photos, each…
We are glad to pre-announce the Joint Transnational Call 2022, a funding opportunity for research projects on the development of new analytic tools and pathways to accelerate diagnosis and facilitate diagnostic monitoring of rare diseases. The aim of the funding opportunity is to enable scientists in different countries to build an effective collaboration on a…
The Fondazione Gianni Benzi is organizing the XIV Foresight Training Course (FTC) on the theme of « The health emergency: Regulatory crash and future perspectives » as a virtual meeting that will take place on December 10th, 2021 from 11.20 – 18.30 CET. The agenda features the following sessions: Session 1 – How the European regulatory framework reacted to the COVID-19 emergency: Extraordinary…
The 1st International Conference on Rare Diseases and Paediatric Research is being organized by 95, Rare Alliance Greece together with Consorzio per Valutazioni Biologiche e Farmacologiche (CVBF) and « Athena » Research Center in Information, Communication and Knowledge Technologies. The Conference is aimed at opening the discussion with all relevant stakeholders on the challenging topic of research…
VASCERN will hold a webinar on Tuesday November 23rd, 2021 from 5pm to 6pm (CET) entitled: Diagnostic and Management Pathway for Severe and/or Rare Infantile Hemangiomas with Dr. Andrea DIOCIAIUTI, VASCA WG member and dermatologist from Bambino Gesù Children’s Hospital, I.R.C.C.S, in Rome, Italy. This will be the the first of a series of four webinars exploring the Patient (Diagnostic and…
The European Medicines Agency (EMA) has announced the publication of a guideline on registry-based studies following its adoption by the EMA’s cross-Committees Task Force on registries and the Committee for Medicinal Products for Human Use (CHMP). The guideline provides pharmaceutical organisations with key methods and good regulatory practices on the planning and conduct of studies…
The Funders Constituent Committee of the International Rare Diseases Research Consortium (IRDiRC) has set up a Task Force to identify barriers and opportunities for the use of telehealth to improve diagnosis, care, and research experiences for rare disease patients – including technological, legal, cultural, linguistic, healthcare system, and patient/provider factors. This will be accomplished through survey and…