Within the EJP-RD project the 3rd Call for Research Training Workshops is now opened (27. January-7. March 2021).
Applicants from ERN Full Members or Affiliated Partners can submit WORKSHOP TOPICS on rare diseases research to obtain funds (25.000€) in order to conduct a 2-day workshop.
For more information you can visit the website.
On Tuesday March 2nd at 17:00 – 18:00 CET an Endo-ERN webinar about “Molecular diagnostic testing of imprinting disorders and related growth disturbances” is organised. The Endo-ERN webinar will be held by Prof Thomas Eggermann from University Hospital Aachen, Germany.
Molecular diagnostic testing imprinting disorders and related growth disorders is challenging due to the broad spectrum of molecular defects. Additionally, the decision on the molecular testing algorithm is hindered by the clinical heterogeneity of these entities. However, the precise identification of the nature of the defect is often a prerequisite for the clinical management and genetic counselling. With the [...]
The Endo-ERN newsletter of December 2020 is out now!
Read more about upcoming Endo-ERN webinars, Special supplemental issue on Rare Endocrine Conditions, EJP RD Research Training Workshops for ERN members and much more.
The WorldMEN meeting has something different compared to all the other classical meetings: it was first created to allow for intense discussions about the discovery of the genetic etiologies of tumor syndrome in 1984. Over the last years, the WorldMEN meetings expanded the scope of their participants to a wide audience of endocrinologists, surgeons, gastroenterologists, oncologists, geneticists and more, all concerned by the diagnosis and management not only of multiple endocrine neoplasia, endocrine tumor syndromes and the various diseases they include (Von Hippel Lindau disease, pheochromocytoma and paraganglioma, pituitary tumors, neuroendocrine tumors, neurofibromatosis, calcium disorders…), but also endocrine cancers in [...]
On Thursday January 28th at 17:00 – 17:30 CET an Endo-ERN CPMS webinar about “How to invite members to your panel, schedule a video meeting and join a video meeting” is organised.
Danielle Steenvoorden from the Operational Helpdesk will give you an overview of the following steps after opening a patient panel within CPMS: how invite members and schedule and join a video meeting. At the end of this webinar there will be a live Q&A for all your questions.
This is the second part of a series of webinars about CPMS.
The first webinar “CPMS: how to enroll a [...]
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there [...]
In September 2020 the EJP RD launched its second call of the “European Reference Networks (ERNs) Training and support program” as part of the ‘Training and Empowerment’ activities that aim to fill the gap in education on rare diseases research.
The “Research Training Workshop” call is aimed at identifying workshop topics to train ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. Selected applicants will receive financial support for the organization of a 2-days workshop for 20 participants.
Training themes include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, [...]
In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organized on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.
All interested applicants are invited to participate in this event. The objectives of the meeting are as follows:
Presentation of the call modalities and objectives followed by Q&A session with participants Presentation of various perspectives of the remaining challenges that the present call will [...]The Internal Call for Innovation Project in Clinical Trials Methodology in Limited Populations has been launched on December 7, 2020. The call is open to EJP RD beneficiaries and their linked third parties.
The innovation methodologies topics particularly include (but are not limited to):
· Development of a disease progression model from a natural history cohort or other observational studies.
· Development and validation of a disease specific clinically meaningful outcome with special interest in PCOMs, or composite endpoints.
· Development of a design and analysis procedure for a pharmacometric model and/or bridging study.
· Development of a randomization-based [...]
In this webinar, Dr. Jarod Wong from the University of Glasgow will review the endocrine and bone morbidity in DMD with focus on the updated international care recommendations and discuss areas for future research which includes management of endocrine and bone in adults with DMD. He will be joined by Justus Kuijer who will share his experience of endocrine and bone morbidity.
Duchenne muscular dystrophy (DMD) is a rare X-linked inherited neuromuscular condition affecting 1 in 4000 boys. Most are diagnosed in early childhood, and it is characterised by progressive muscle wasting. To date, there is no curative therapy, and [...]
