News

NINDS’ Annual Nonprofit Forum

The National Institute of Neurological Disorders and Stroke (NINDS) invites members of nonprofit organizations to an annual Nonprofit Forum. The Progress through Partnership Forum provides an opportunity for nonprofit leaders to network with colleagues and to engage in discussions with NINDS staff. The Forum will take place on July 24-25, 2023. Registration and more information […]

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Global Genes – Xcelerate RARE Open Science Data Challenge

Global Genes is excited to share the news that the Xcelerate RARE Open Science Data Challenge has officially opened! The Xcelerate RARE: A Rare Disease Open Science Data Challenge is bringing together researchers and data scientists in a collaborative and competitive environment to make the best use of patient-provided data to solve big unknowns in […]

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Annual IMPC Conference ‘The Power of Mouse Genetics: Opportunities for Genomic and Precision Medicine’ 10-11 July in Oxford (UK)

This year the annual conference of the International Mouse Phenotyping Consortium (IMPC) will be held at Keble College, Oxford, UK from the 10-11 July, 2023. The conference is entitled: “The Power of Mouse Genetics: Opportunities for Genomic and Precision Medicine“. It features an outstanding list of distinguished speakers at the forefront of mouse and human […]

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EURORDIS Open Academy: seeking advice

The EURORDIS Open Academy has launched a survey to know more about training needs, such as the reasons for engaging in training, main topics of interest, and the roadblocks that would prevent people from attending a training. The survey is open now and will be closing on 31st May, 2023. The target audience is rare […]

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Time to Act – Improving Rare Disease Diagnosis and Solving the Unsolved Rare Disease through collaboration in Europe

The Solve-RD consortium and associated European Solve-RD network, including among others six European Reference Networks, EURORDIS, Orphanet and leading European Rare Disease Clinicians and Researchers in 20 countries, call upon all European RD stakeholders, including EU Member States, the European Commission, the Council of the European Union, the general public and private organisations active in […]

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IRDiRC Interview Series

IRDiRC is thrilled to present a new video from the Interview Series with its members. This month we have in the spotlight David Adams, IRDiRC Diagnostics Scientific Committee (DSC) Chair and Deputy Director of Clinical Genomics at NHGRI/NIH (USA). Check out David’s answers on what IRDiRC means for him and the role it plays for […]

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Now open: The Public Consultation on the Strategic Research & Innovation Agenda of the future European Rare Diseases Partnership

Under Horizon Europe, the European Commission together with member states and associated countries decided to implement the Rare Diseases Partnership which brings a unique vision that aims at leaving no one behind by supporting robust patient need-led research, by utilising and maximising the power of health and research data, by engaging and coordinating regional, national, […]

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Orphan Designation: An Overview by EMA

There are over 6,000 different rare diseases identified to date that affect 3.5% – 5.9% of the worldwide population. They have a big impact not only on the person diagnosed, but also on their families, friends, care takers and society as a whole. This is why development of medicines addressing rare diseases, also known as […]

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Notice of Upcoming Funding Opportunity: National Pediatric Rare Disease Clinical Trials and Treatment Network

The Canadian Institute of Health Research – Institute of Genetics is pleased to announce the upcoming funding opportunity “National Pediatric Rare Disease Clinical Trials and Treatment Network”. The specific objectives of this funding opportunity are to: Develop a platform to support pediatric rare disease clinical trials in Canada; Increase the capacity to perform rare disease […]

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