Rare Disease Day in Dimed – Research Project

29 February 2020 will be the thirteenth international Rare Disease Day coordinated by EURORDIS. On and around this day hundreds of (patient) organisations from countries and regions all over the world will hold awareness-raising activities.

In Padova, Italy, a meeting regarding research about rare diseases is organized.

The programme can be found here. MTG 3 Adult chair Pietro Maffei is part of the Scientific Committee.

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EventRare Disease Day in Dimed – Research Project
Дата28 февруари - 29 февруари 2020
МестоположениеPadova, Italy
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EJPRD – ERN internal training and support program calls

EJP-RD has opened funding calls for training programs based on two main components: research mobility fellowship and research training workshops.

The aim of these programs is to fill the gap in the available education on rare diseases research by creating and implementing a comprehensive and cohesive program of education and empowerment for different target groups or stakeholders such as researches and young clinicians.

Submission for the fellowship is possible until 16th of March 2020. For the research training workshops, the deadline for submission is 2nd of March.

For more information, visit the website.

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ECE 2020

The 22nd Annual ECE congress will be held 23-26 May 2020 in Prague, Czech Republic.

Endo-ERN at ECE 2020

Endo-ERN will be present at ECE 2020 with a symposium, lunch hub session, a shared stand with EuRRECa and will held its Steering Committee & Advisory Board meeting.

Sunday 24 May

  • Endo-ERN stand – Booth 27

Monday 25 May

  • Endo-ERN stand – Booth 27
  • Endo-ERN Symposium – 10:20 – 11:50 hrs
  • Endo-ERN Steering Committee & Advisory Board meeting – 13:00 – 15:00 hrs

Tuesday 26 May

  • Endo-ERN stand – Booth 27
  • Endo-ERN lunch hub session – 13:00 – 13:30 hrs 

More information will follow soon

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EventECE 2020
Дата23 май - 26 май 2020
МестоположениеPrague, Czech Republic
ОрганизацияThe European Society of Endocrinology
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Bone Curriculum Symposium

This year the Bone Curriculum Symposium will take place at Het Pand in Ghent, Belgium on 12 & 13 March 2020.

The bone curriculum serves as a lecture cycle on bone which is covered within three consecutive yearly symposia. The scope of the bone curriculum is to provide high quality continuous education for clinicians of all specialities interested in, seeing or treating patients with osteoporosis and / or bone diseases and is also a structured educational programme for trainees in rheumatology and other specialities looking at bone and calcium – phosphate metabolism disorders.

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EventBone Curriculum Symposium
Дата12 март - 13 март 2020
МестоположениеGhent, Belgium
ОрганизацияKBVR/SRBR Osteoporosis and Fracture Prevention Group
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Endo-ERN webinar : Turner Syndrome Guideline & the patient perspective

On Thursday February 13th at 15:00 – 16:00 CET an Endo-ERN webinar about “Turner Syndrome Guideline & the patient perspective“ is organised.

The webinar will be held by Prof. Claus Gravholt, MD, PhD, Aarhus University Hospital Denmark and Arlene Smyth, mother of a patient, Executive Officer of the Turner Syndrome Support Society and Endo-ERN patient representative.

Claus Gravholt will give a short description of the new international guideline concerning health and general follow-up of adult women with Turner syndrome. He will focus on the medical health issues, as well as the neurocognitive challenges that many women with TS face during adulthood and about the need for centralized care in all countries, as well as the interdisciplinarity which is needed. Furthermore, Arlene Smyth will be sharing the patient perspective side.

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WebinarEndo-ERN webinar : Turner Syndrome Guideline & the patient perspective
Дата13 февруари 2020
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International EJP-RD Course

The International Course Training on strategies to foster solutions of undiagnosed rare disease cases is part of a series of training activities proposed by the EJP RD and will take place on 27-29 April 2020 in Rome, Italy.

Several initiatives have been undertaken at national and international level for undiagnosed rare diseases aimed at identifying clinical pathways and innovative methods to reach diagnosis. This course will illustrate methodologies and tools already used internationally and will provide participants with useful examples for the resolution of undiagnosed cases.

The course will provide participants, through the presentation of sample use cases that have long eluded diagnosis, with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed RD cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.

Registration for this course is open until January 26, 2020. For more information about this course, have a look at the program or visit the website.

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EventInternational EJP-RD Course
Дата27 април - 29 април 2020
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ESPE Science Symposium

The second ESPE Science Symposium will take place on October 30th, 2020 and will be hosted at Radboud University Medical Center, Nijmegen in The Netherlands by Prof. Hedi Claahsen.

The ESPE science symposium aims to promote the development of an interactive network between clinicians and researchers, helping to reduce the gap between research and patient care. It will also provide the means to disseminate new scientific knowledge in the community of paediatric endocrinology.

Its focus will be ‘Congenital adrenal hyperplasia: from molecular medical research to clinical application’ and it will be supported by Endo-ERN and the ESPE DSD Working Group. The duration of the meeting will be 1.5 days.

Prof. Olaf Hiort, Prof. Nicole Reisch, Prof. Faisal Ahmed, Prof. Michel Polak and ePAG representative Johan Beun are part of the organizing committee. In addition, Endo-ERN is represented by several Endo-ERN speakers during the sessions.

The congress fee is €80 per attendee, including dinner on the first night. Application is open until June 1st 2020. For more information about the symposium, have a look at the invitation below or visit the website.

Invitation ESPE Science Symposium 2020

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EventESPE Science Symposium
Дата20 октомври 2020
МестоположениеNijmegen, Netherlands
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Lecture by Prof. Thomas Danne in January 2020

We are very pleased to invite you for the lecture of Professor Thomas Danne on Wednesday, 15 January 2020 at the LUMC, The Netherlands.

The theme of lecture is Time in range, its use and implication in the treatment of (children with) type 1 diabetes. 

The duration will be 1 hour and accreditation has been requested for 1 point. The lecture is open and free for everyone who is interested in this subject.

Click here for the invitation.

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