As we come to the end of 2023, we want to reminder all members that a minimum of 1 patient virtual consultation should be held per member healthcare provider.
This can include a virtual meeting or just seek written opinions within the CPMS. If you wish to set up a meeting we recommend to first check you relevant MTG regular meeting slots.
Endo-ERN ePAG Diana Kwast-Hoekstra was recently appointed to the Therapies Scientific Committee of the International Rare Disease Research Consortium (IRDiRC).
“With my nomination and involvement I will be happy to take my acquired knowledge and experiences as a nurse scientist and ePAG at European level and bring it to the attention of the other members of the TSC, in order to achieve the goals of the IRDiRC as much as possible. In my opinion, knowledge and experiences know no boundaries and should always be used to improve care for people with rare conditions.”
The IRDiRC teams up with [...]
Find out about the EuRR-Bone registries at this upcoming webinar on Wednesday, December 13 from 1600 CET.
Organisers: European Calcified Tissue Society and ERN BOND
Speaker: Dr. Natasha Appelman-Dijkstra, Leiden University Medical Center, Leiden, The Netherlands.
Hosts: Prof. Martine Cohen-Solal, French Institute of Health and Medical Research Paris, France & Dr. Mariya Cherenko, Leiden University Medical Center, Leiden, The Netherlands.
Introduction by Prof. Cohen-Solal (3 min)
Presentation [...]
Drug shortages and drug repurposing are hot topics in the rare disease community as highlighted by Endo-ERN ePAG Joahn de Graaf at the Endo-ERN symposium at EPSE in September..
New IRDiRC board member Diana Kwast kindly shared this resource that might of interest the the wider rare endocrine disease community.
The commentary IRDiRC Drug Repurposing Guidebook: making better use of existing drugs to tackle rare diseases has been published in Nature Reviews Drug Discovery.
This guidebook, authored by the IRDiRC Task Force “Drug Repurposing Guidebook” facilitates drug repurposing for [...]
This webinar will feature a panel of experts from Helsinki University and Helsinki University Hospital.
HNF1B is an essential regulator of fetal development of organs including pancreas, kidneys, and liver. Although initially associated with monogenic diabetes (formerly MODY5) and then polycystic kidney disease co-occurring with diabetes (renal cysts and diabetes syndrome), the clinical presentation now covers numerous multiorgan features highly variable between individuals.
During this webinar selected cases will be presented.
Presenters are:
Jarno Kettunen MD, PhD, resident in endocrinology
Helka Parviainen MD, PhD, radiologist, subspecialty in abdominal radiology, Clinical Associate, Research Programs Unit, University of Helsinki
Tiinamaija [...]
Register now for this informative webinar with a clinical perspective from a leading expert and and a discussion with patient participation.
Gonadal dysfunction in males with congenital adrenal hyperplasia (CAH) we will focus on an important long term complication in males with CAH finally leading to infertility. Gonadal function can be impaired due to primary gonadal failure caused by testicular adrenal rest tumours (TART) and/or secondary gonadal failure caused by suppression of the hypothalamic pituitary axis. In both cases the primary cause is poor hormonal control with subsequent elevated ACTH concentrations and elevated adrenal androgens concentrations. In this webinar you [...]
Save the date for this informative and wide-ranging webinar that will be presented by:
Prof Eystein Husebye, Department of Clinical Science and KG Jebsen Center for Autoimmune Disorders, University of Bergen, Bergen, Norway,
Department of Medicine, Haukeland University Hospital, Bergen, Norway;
Department of Medicine, Karolinska Institute, Stockholm, Sweden
Register now. If you cannot attend, register and you will be sent the recording.
The ISPED event has been endorsed by Endo-ERN.
A three day meeting November 6-8, 2023 with a comprehensive agenda featuring international speakers covering such topics as:
Congenital Hypopituitarism: Discoveries and Challenges Type 1 Diabetes – how, when, why – a vision to prevention Thyroid function in cancer survivors News in the management of congenital adrenal hyperplasia The use of microRNAs in pediatric endocrinology: new diagnostic and therapeutic markers Diabetes secondary to oncoematologic diseases; strategies to facilitate diagnosis and adequate and innovative treatment When to suspect rare forms of diabetes? Eating behaviour disorders in type 1 diabetes mellitusCheck out the [...]
The programme for the next installment of EClip is now available! Featuring international speakers topics include:
Mechanisms underpinning adipose dysfunction and metabolic disease in generalized lipodystrophy The adipocyte response to ionizing radiations New human leptin variants Current status of the EClip Registry
Full Programme (, 2 MB)
To register please email: eclip2023@teseoricerche.it
