The ERICA Patient Reported Outcome Measures (PROMs) Repository
The ERICA Patient Reported Outcome Measures (PROMs) Repository is the first attempt to identify and centralize Clinical Assessment Outcomes questionnaires of relevance for rare diseases and constitutes a milestone in the Europe-wide standardization of Patient-Centered Outcome Measures (PCOMs) and PROMs for rare diseases. It has been made possible through the joint collaboration between Orphanet, Mapi Research Trust/ICON and ERN EuroBloodNet (VHIR, APHP), and the active contribution of ERNs and ePAGs. From Endo-ERN prof. Nienke Biermasz (LUMC) have participated in the ERICA WP3 PCEWG (Patient-centred expert working group) and contributed in this first version. Via ERICA you [...]
ERICA Educational Webinar 2 “Practical guide on how to use the Catalogue of services and the IMT”
In this ERICA webinar, Anton Ussi (Operations & Finance Director at EATRIS), together with Agustin Arasanz Duque (Senior Innovation Manager at EATRIS), will provide 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. It builds on the introductory webinar “Current research services available for the rare diseases community” that was organized in November 2021 (available on the ERICA website Continue reading
IRDiRC Announces The Creation of Regulatory Science Committee to Tackle Regulatory Challenges in Rare Disease Research
IRDiRC, a global collaborative initiative with the vision to enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention, today announced the formation of the Regulatory Science Committee (RSC). The new RSC “brings broad expertise across different stakeholders and geographies allowing for a balanced synergy that will provide insights and guidance into the advancement of IRDiRCs mission” said David A. Pearce, Chair of IRDiRC.
Read the full press release here: https://irdirc.org/irdirc-announces-creation-of-regulatory-science-committee/
ERN Research Training Workshops funding opportunity
The ERN Research Training Workshops funding opportunity is now open for applications until October 15th, 2022. 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, [...]
Last round for the Research Mobility Fellowships funding opportunity
The European Joint Programme on Rare Diseases (EJP RD) is glad to announce that the last round for the Research Mobility Fellowships funding opportunity will open on October, 3rd, 2022. The call aims to support PhD students, postdocs, and medical doctors in training to undertake scientific visits fostering specialist research training outside their countries of residence.
The exchange can be carried out (1) within the same ERN (Full Members and Affiliated Partners), (2) between different ERNs (Full Members and Affiliated Partners), or (3) between ERN Full Members / Affiliated Partners and non-ERN institutions.
Either home or host (secondment) institution must [...]
Mini-survey of the Dutch Pituitary Foundation
The Dutch Pituitary Foundation, the Wilhelmina Children’s Hospital and the Princess Máxima Center in Utrecht in collaboration with European Reference Network for Rare Endocrine Conditions (Endo-ERN) are collecting the opinions and experiences of patients (and/or carers) living with the consequences of hypothalamic dysfunction, or problems in the pituitary/hypothalamus area after treatment for a tumour in the hypothalamic/pituitary region.
We would like to know what patients consider important about their condition and which topics they believe should be given priority in healthcare, in research, and on how to function in everyday life.
We are looking for patients who have been diagnosed [...]
ePAG Exchange of Good Practices – VASCERN Flowchart webinar
On Tuesday September 27th at 16:00 – 17:30 CEST an webinar about ePAG exhange of Good practices Webinar – VASCERN flowchart will be given Pernille Henriksen and Manuela Lourenço Marques, VASCERN ePAG advocates.
In this webinar Pernille Henriksen and Manuela Lourenço Marque are going to share their experience and expertise creating a simple and useful patient-oriented resource that outlines cellulitis signs and symptoms, treatment, and prevention measures. Pernille and Manuela will walk us through the methodology they developed to create this flowchart alongside VASCERN HCPs. They will share tips and helpful information that will allow you to [...]
20th Congress of the European NeuroEndocrine Association (ENEA)
The 20th Congress of the European NeuroEndocrine Association (ENEA) will be held from 7 to 10 September 2022 in Lyon, France.
The Program Organizing Committee has prepared a balanced program covering all the aspects of neuroendocrinology. From basic research to translational studies and clinical practice, you will find a choice of relevant and cutting-edge topics. You can also have the opportunity to present your recent work, and more importantly, the opportunity to discuss and exchange ideas with other members of our neuroendocrinology community.
Steering Committee & Advisory Board Meeting at ESPE 2022
The next Endo-ERN Steering Committee & Advisory Board meeting is going to held on Friday 16th of September, 2022 from 13:15 – 14:45 hrs at the ESPE congress venue in Rome, Italy.
A guided tour (18:00-20:00 hrs) and dinner (20:00 – 22:30 hrs) for all SC-AB members will be on Thursday September 15th, 2022
More information will be sent nearer the date.
