A joint webinar from ESE, Endo-ERN and ESPE

28 June 2022, 16:30 – 18:00 CEST

Join us for the first joint rare disease webinar from ESE, Endo-ERN and ESPE discussing:

Essential insights for the transition from paediatric to adulthood care in rare pituitary disorders

Chairs: Violeta Iotova (Bulgaria), Nienke Biermasz (Netherlands) and Evangelia Charmandari (Greece)

The session will follow the programme below:

Introduction from the Chairs Mapping of the current transition of care for patients with pituitary disease at Endo-ERN Reference Centers
Dr Savi Shiskov (Bulgaria) Presentation of a use case illustrating unmet needs from the patient perspective.
Patient/parent representative Discussion and proposal for next steps [...]

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Pituitary Update Course 2022

The workshop “Estonian Pituitary Update Course” will takes place in Tallinn (Estonia) from October 12 to October 14, 2022 and has speaker presentations from various Endo-ERN expert members from 3 different countries.

The workshop will cover the latest updates on acromegaly, Cushing’s disease, non-functioning pituitary adenomas, but also cancer effects on pituitary glands and much more! This update course is a joint course held by the European Society of Endocrinology (ESE) and Endo-ERN. The Estonian Endocrine Society will be the local host. All participants are encouraged to submit a case around pituitary diseases. It can be classical or something that [...]

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Second annual conference Idiopathic Ketotic Hypoglycemia

The Second annual conference Idiopathic Ketotic Hypoglycemia will take place on June 11 and June 12, 2022. The annual conference will be fully virtual to make sure everyone has a chance to join, no matter where in the world they live. All of the presentations will be available after the conference for educational purposes.

The goal of the conference is to unite the families affected by idiopathic ketotic hypoglycemia, the experts, the healthcare professionals, and the industry so we together can take the first step towards an enhanced understanding of idiopathic ketotic hypoglycemia.

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GloBE-Reg: Global Registry For Novel Therapies In Rare Bone & Endocrine Conditions

GloBE-Reg is a new international registry project that has been launched by the Office for Rare Conditions at the University of Glasgow. The project believes that post regulatory approval studies may be more effectively performed through registry-based studies that collect relevant real world data through a joint collaborative approach between scientific centres, industry partners and medical societies. GloBE-Reg will also use this approach to serve the needs of the endocrine community for assessing longer term clinical outcomes, which are particularly important to continuously expand our scientific knowledge and improve care in children.

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Endo-ERN webinar: New growth treatments for Achondroplasia

On Tuesday May 10th at 16:00 – 17:00 CET an Endo-ERN webinar about “New growth treatments for Achondroplasia” will be given by Klaus Mohnike, Jean Pierre Salles and patient representative Patrica Carl.

Achondroplasia is the most common form of disproportionate dwarfism. The rare skeletal dysplasia leads to an adult height of ~130cm. Historically, Achondroplasia is not an ENDO-topic with experts coming from various fields. However, due to new treatment options, there is an overlap because prescriptions and surveillance will be primarily done by endocrinologists. Two medical experts and a patient representative will summarize the current situation and upcoming treatment options.

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ESPE Science Symposium 2022

The ESPE Science Symposium 2022 on “Hypothalamic Dysfunction in Childhood; Understanding its etiology and developing new ways to improve outcome of children with genetic or acquired causes of hypothalamic dysfunction” will be held on 7-8 October 2022 at the Princess Maxima Center, Utrecht, the Netherlands.

There will be discussions about the etiology of genetic and acquired hypothalamic dysfunction in childhood, its consequences and new ways of management to improve outcome. In addition, the focus will be on building new networks and collaboration within ESPE and Europe, together with the patient organizations and Endo-ERN.

For young clinicians and scientists : The [...]

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EJPRD ERN Workshop “Functional exploration of genetic variants in cardiac diseases

In the context of EJP RD’s ERN Workshops, a face-to-face workshop entitled “Functional exploration of genetic variants in cardiac diseases” aimed at presentation of functional explorations of variants of interest identified using Drosophila, C. elegans, Zebrafish and iPSc models to understand the molecular bases of genetic diseases, in particular heart and muscle diseases, is being organised by Philippe Chevalier of the Hospices Civils de Lyon.

The in-person event will take place over two days on June 14th – 15th at the Hospices Civils de Lyon in Lyon, France.

The workshop is open by prior registration and selection to cardiologists, [...]

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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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