NEW SESSION ADDED: 5-year Evaluation Q&A Sessions
The 5-year Evaluation process is underway.
To support our members we will hold 4 Q&A sessions during the month of January.
Thursday, January 12 at 11:30-12:30 (CET) Monday, January 16 at 16:00-17:00 (CET) Wednesday, January 18 at 09:00-10:00 (CET) Tuesday, January 24 at 15:00-16:00 (CET) JUST ADDED: Wednesday, February 15 at 1700-1800 (CET)Please REGISTER and add to your agenda now. These webinars will be recorded and made available on our YouTube channel. Subscribe now to ensure you are kept up-to-date.
Innovative Health Initiative (IHI) launches new funding round
The Innovative Health Initiative (IHI) has launched its third call for proposals, featuring topics covering rare diseases and mental health, and addressing challenges such as disease prevention, hospital care, and patient-generated evidence.
Deadline for proposals: March 15, 2023
Details of the call, including the topic texts and information on how to apply, can be found here.
WEBINAR: Craniopharyngioma and hypothalamic obesity
Join our panel of international experts on the topic of Craniopharyngioma and hypothalamic obesity. This webinar program uniquely offers paediatric and adult endocrinology expertise, and the patient perspective.
Chairs: Prof. Nienke R. Biermasz, Leiden University Medical Center, Netherlands and Prof. Irène Netchine, Trousseau University Hospital, France
1605: Pathophysiology of hypothalamic obesity in CP patients Dr. H.W. Gan, Great Ormond Street Hospital/UCLH, UK
1620: Hypothalamic obesity in patients with CP needs individualized management Dr. Hanneke M. van Santen, University Medical Center Utrecht, Netherlands
1635: Living with CP – what are the challenges Johan De Graaf, Dutch Pituitary Foundation, Netherlands
1650: [...]
Endo-ERN Newsletter December 2022 Happy Holidays!
Endo-ERN and ERICA Coordinator Alberto Pereira at the International Conference on Clinical Research Networks for Rare Diseases
At a two-day conference (Dec 1-2, 2022) on clinical research networks (CRNs) for rare diseases the experts from different continents gathered in Paris to increase mutual knowledge on CRNs structure, activities and identify pathways to stimulate collaboration and interoperability of these networks. Endo-ERN and ERICA Coordinator Alberto Pereira introduced the European Rare Disease Research Coordination and Support Action(ERICA) consortium achievements where all the ERNs take part to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity.
Want to stay up-to-date with ERICA’s activities? Subscribe to their newsletter
ERICA Educational Webinar 2: Practical guide on how to use the Catalogue of services and the IMT
In this webinar, Anton Ussi (Operations & Finance Director at EATRIS), Rosan Vegter (Scientific and Education Manager at EATRIS) together with Agustin Arasanz Duque (Senior Innovation Manager at VHIR/EATRIS), provided practical guidance for using two important tools for RD researchers, developed within EU-funded projects: ERICA and EJP RD.
This webinar is part of the Educational Webinar Series from ERICA’s WP5 Translation and Innovation.
Check out the recording.
Welcome Chris Breen new Endo-ERN ePAG
We extend a warm welcome to our newest ePAG Chris Breen from the Klinefelter’s Syndrome Association UK. Chris shares his journey to diagnosis:
“I wasn’t diagnosed with Klinefelter’s until about 7 years ago when I was 50. And have since discovered I have several underlining health problems which I was previously unaware of.
However, for me the diagnosis was very validating as it explained things that had happened throughout my life I previously attributed to just being slightly different from the average person.
Until I had my diagnosis, I had never heard of it, despite working in Healthcare since [...]
Endo-ERN Newsletter December 2022
UPDATE: EuRRECa/EuRR-Bone
Mark your calendar and save the date!
Monday, April 3, 2023
The 1st Joint EuRRECa and EuRR-Bone meeting will take place in the morning at Leiden University Medical Centre, the day before Endo-ERN General Assembly. Click here to register and see the programme here. Faisal Ahmed’s Inaugural Lecture will take place during the afternoon at Universiteit Leiden. Past event report Oct 2022ERICA – ERN Data Management Strategy Multistakeholder Workshop, Heidelberg
This workshop included discussions aimed at helping ERNs in setting up, maintaining and improving their registries. The valuable face-to-face interaction, not possible during [...]
