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Hope your 2025 is off to a great start! At Endo-ERN we start the year with a complete team and we are happy to introduce the newest members to you.

As you make your plans for 2025 perhaps new research is on your mind. The European Rare Diseases Research Alliance (ERDERA) Joint Transnational call is now open with an informational webinar planned for 14 January.

Is your resolution upskilling? The Endo-ERN webinar programme with training and education from #raredisease experts continues, with additional webinars from ESE Talks..., ESPE Connect, and ERICA focused on #raredisease. And some in-person events like the transition focused TALENT conference and an advanced course on growth/growth disorders.

Enjoy the read!

Endo-ERN team

Work Package 4: Get to know Greta

Greta Grinski joined our co-coordinator Olaf Hiort at UKSH in Lübeck during the summer of 2024 as the Endo-ERN Operational Helpdesk Manager.

Greta holds a Master's degree in Biomedical Sciences and previously worked as a project assistant in clinical research.

In addition to her role supporting CPMS 2.0, she supports the project SFB 1665: Sexdiversity by providing a link between medical care and the SFBs research projects.

Contact Greta

Work Package 6: Get to know Kamelia

Kamelia Markovska joined Violeta Iotova at UMHAT "Sveta Marina" Varna last Autumn as Training & Education Project Manager.

Kamelia is currently studying International Business at the University of Economics - Varna with the coursework delivered in English.

Overseeing the day-to-day management of Endo-ERN's training & education activities is the perfect complement to Kamelia's study by providing real-world application.

Contact Kamelia

Work Package 7: Get to know Charlotte

Charlotte Gaasterland joined Olaf Dekkers at Leiden University Medical Centre just last month as Senior researcher on Guideline Methodology.

Charlotte details her experience and ambition in her new role. "My name is Charlotte Gaasterland, and I have a background as a psychological methodologist. I finished my PhD on trial designs for rare disease drug trials in 2019, after which I was employed as a medical CPG developer for the Dutch National Federation of Medical Specialists. In that capacity, I also worked as a guideline methodologist for the ERN Ithaca, where I helped develop guideline methodology, endorsement strategies and was part of CPG projects. I currently supervise several PhD candidates who are developing methodology for rare disease guidelines.

In my new position for Endo-ERN I am looking forward to creating more guidelines, broaden my network and knowledge on endocrinology, and do more methodology projects, because developing guidelines for rare diseases comes with many interesting challenges!"

Contact Charlotte G

FUNDING: ERDERA 2025 Joint Transnational Call for Proposals

The European Rare Diseases Research Alliance (ERDERA) Joint Transnational Call (JTC) for Proposals 2025 is now open! Submissions are invited from research teams from across Europe and beyond to submit collaborative projects focused on “Pre-clinical therapy studies for rare diseases using small molecules and biologicals – development and validation”.

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REGISTER: 24th Advanced Postgraduate Course on Growth and Growth Disorders

This 5-day course will cover the biology of human growth and clinical management of growth disorders. Teachers are internationally recognised experts in paediatric endocrinology and growth.

The course is directed towards clinical fellows and recently graduated pediatric endocrinologists and is limited to 26 participants.

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Endo-ERN Endorsed: TALENT – Endocrine diseases management 7th Conference

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REGISTER: Together4RD & ERICA industry collaboration webinar

The 2nd webinar organised by Together4RD & ERICA will take place Thursday, 16 January.

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REGISTER: ESE Talks...Rare Diseases - Hypothalamic Obesity: Treatment modalities and pre-requisites for treatment efficacy

Register now for the next joint ESE, Endo-ERN and ESPE webinar: Hypothalamic Obesity: Treatment modalities and pre-requisites for treatment efficacy

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COMPLETE: Endo-ERN Transition of Care Working Group Survey

The Endo-ERN Transition of Care Working Group, invites you to complete this survey.

The survey aims to gather valuable insights into the current practices, challenges, and opportunities in managing the transition of care for patients with rare endocrine diseases, focusing on both pediatric and adult care perspectives.

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