ERN Research Training Workshops Funding Opportunity

The ERN Research Training Workshops funding opportunity is now open for applications until April 25th. The goal of the workshops is to train researchers and clinicians affiliated to ERN- Full  Members or – Affiliated Partners in relevant topics on research in rare diseases. Training themes may include innovative research methodologies, diagnostic research topics, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Moreover, the workshops will be aiming to provide a cross-ERN added value.

The workshops will be delivered as two-day events. The costs for the workshop organization will be covered up to a limit of €25,000 (venue, administrative, [...]

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ECRD2022

The 11th edition of the European Conference on Rare Diseases & Orphan products will take place fully online from 27 June to 1 July 2022.

 

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CPMS Training workshop

For all of our new and existing members, we are holding a CPMS training workshop on Friday 8th of April from 10:00-12:00 CET.

This online workshop will cover the following topics:

How to register your members: step by step Walkthrough of the sy Dashboard Basic navigation Personal settings Where to find guidance/ resources for specific tasks Questions & any specific queries

 

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ESPE 2022

The 60th Annual ESPE Meeting will be held 15-19 September in Rome, Italy.

The theme of 60th ESPE Meeting is “Personalized Medicine in Paediatric Endocrinology”.
The tremendous advancement in molecular biology has led to innovative approaches to many endocrine conditions thus permitting more accurate diagnoses, tailored therapies and adequate genetic counselling. Whereas the personalized medicine approach has been increasingly applied to diagnose and treat endocrine disorders in adults over the last decade, its implementation in paediatrics is still at the beginning. Therefore, the Meeting will focus on the application of personalized medicine to the child with endocrine [...]

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Endo-ERN webinar: Noonan syndrome with emphasis on current guidelines regarding growth, endocrinology and growth hormone therapy

On Tuesday June 7th at 17:00 – 18:00 CET an Endo-ERN webinar about “Noonan syndrome with emphasis on current guidelines regarding growth, endocrinology and growth hormone therapy” will be given by Jovanna Dahlgren from Sahlgrenska University Hospital, Sweden and Kees Noordam from Radboud University Medical Centre, the Netherlands and Centre for Paediatric Endocrinology Zurich (PEZZ), Zurich, Switzerland.

Noonan syndrome (NS) belongs to the group of Noonan syndrome spectrum disorders (NSSD), which is a group of phenotypically related conditions. These syndromes are caused by germline pathogenic variants in genes within the Ras/mitogen-activated protein kinase (Ras/MAPK) signalling pathway. The most [...]

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Webinar: EMA: Repurposing of authorised medicines: pilot to support not-for-profit organisations and academia

The pilot project to support the repurposing of medicines was launched at the end of October 2021 by EMA and the Heads of Medicines Agencies (HMA)

To support not-for-profit organisations and academia ahead of the upcoming deadline for submission (28th February 2022), EMA is hosting a ‘walk-in’ clinic webinar on 17 February 17h-18h30. Representatives of the Repurposing Observatory Group leading the pilot will also participate to the webinar.

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3rd International Workshop on Klinefelter Syndrome, Trisomy X, and XYY

The 3rd International Workshop on Klinefelter Syndrome, Trisomy X, and XYY will be held on 12 – 14 September 2022 in Leiden.

Previous international workshops were organised in Copenhagen (2010) and Munster (2016). The Third International Workshop will take place in Leiden in 2022, the year that Leiden will be the European City of Science. In this 3rd International Workshop we would especially like to share new insights from a ‘life-course perspective’, addressing the impact of an extra X or Y chromosome throughout life. The life-course approach focuses on a healthy start to life and targets the needs of individuals [...]

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EURORDIS Black Pearl awards 2022

Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community.

Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.

The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives.

The eleventh edition of the Awards will take place online on TUESDAY, 8th FEBRUARY 2022 from [...]

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