Read more: Successful Endo-ERN General Assembly 2024

The 8th Endo-ERN was hosted in Milan by Luca Persani of Endo-ERN healthcare provider (HCP) member Istituto Auxologico Italiano – Istituto di Ricovero e Cura a Carattere Scientifico, Italy. Held April 23-24, the Endo-ERN GA was attended by nearly 150 people from 89 different HCP members and ePAGs. The event featured 15 plenary sessions with topics such as:

New grant period 2024-2027 Roadmap to Copenhagen & Transition ERDERA Landmark Integration Project JARDIN Landmark Integration Project Patient journeys European medicine shortages: How can we avoid a disaster for patients with rare conditions?

 

There were updates from all 9 Endo-ERN work [...]

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REGISTER NOW: World Orphan Drug Congress 2024

Endo-ERN is delighted to be a partner of The World Orphan Drug Congress Europe. This event is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.

With this partnership we are delighted to inform you that Endo-ERN members are eligible for a free VIP pass. You can apply now: http://www.terrapinn.com/WODC/ENDO-ERN

Date & Location

22 October 2024 | Pre-Congress Workshops [...]

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Register ECE 2024 – rare endocrine conditions symposium

ECE 2024 will take place 11-14 May in Stockholm, Sweden. Registration is now open! The Endo-ERN project office will attend and host a booth and a symposium.

The Endo-ERN Symposium is now confirmed:

Tuesday, 14 May from 12:00-13:30

1200

Endo-ERN introduction, Prof. Alberto Pereira, Amsterdam University Medical Center, the Netherlands & Endo-ERN Coordinator

1210

Guidelines on familial hyperaldosteronism, Prof. Olaf Dekkers, Leiden University Medical Center, the Netherlands and Prof. Paolo Mulatero, University of Torino, Italy

1240

SDHB and SDHD guidelines, Prof. David Taieb, Aix Marseille University, France

1305

Pituitary tumors: Looking for patients reported outcomes [...]

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NEW ePAG: Welcome Bernd Rosenbichler

Endo-ERN is happy to welcome a new ePAG to the organisation. Bernd Rosenbichler of Alström Syndrom e.V., Germany has joined MTG3. He shares his motivation to join Endo-ERN:

“Raising a child with a rare disease is – that may come as a surprise – a gift by nature. It changes the own perspectives on life, set priorities and opens the mind for totally different things, someone would have never recognized if there wasn’t such a special person.

But of course there is as well the reality of dealing with a rare disease: feeling left alone, not knowing where to [...]

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PARTNERSHIP: Endo-ERN X WODC

Endo-ERN is delighted to announce our partnership with The World Orphan Drug Congress Europe. This event is the largest and most established orphan drug & rare disease event worldwide. Meet over 2000 attendees, hear from 250 leading speakers, and connect with 130 exhibitors as we bring together experts from the start-to-finish of orphan drugs. From regulation and policy, to global pricing and gene therapy.

With this partnership we are delighted to inform you that Endo-ERN members are eligible for a free VIP pass. You can apply now: http://www.terrapinn.com/WODC/ENDO-ERN

Date & Location

22 October 2024 | Pre-Congress Workshops [...]

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RESOURCES: Alström Syndrome Global Conference 2024

Recently the Alström community came together to learn from one another and share their stories. This year’s event was bigger than ever before with families and professionals from 24 countries joining online.

There are recordings available and helpful infographics on topics such as:

 

Liver and semaglutide research Alstrom mouse model Good mental health and the road to independence Importance of sleep Paediatrics: my child’s growth, puberty & diabetes

Check out the full information including past event recordings here.

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REGISTER: Guide to Patient Journeys

Speakers: Matt Bolz-Johnson, Healthcare Advisor, EURORDIS and Michelle Battaye, ERN Manager, ERN eUROGEN

Panelists: Dalia Aminoff, AIMAR ODV – ETS, Patient’s and parent’s organization for anorectal malformation and associated defects; Kate Tyler, Esophageal ATresia Global Support Groups; Nicole Schwarzer, SoMAeV – German organization for those born with ARM or Hirschsprung’s Disease; Mary Kearney, Friedreich’s Ataxia Research Alliance

When: 20 March 2024 at 15.00-16.00 CET

Register now

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