Our colleagues at the European Society of Endocrinology have created an informative infographic for European Hormone Day: Why Hormones Matter.
European Hormone Day
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 [...]
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 [...]
Endo-ERN Newsletter April 2024
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 [...]
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 [...]
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.
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: The Neuropathies Rehabilitation Summer School: patient partnership in educational programmes
Organised by EURORDIS a webinar is planned for 12 March, 2024 at 18.00 – 18.45 CET. The speaker is Jean Philippe Plançon President of European Patient Organization for Dysimmune and Inflammatory Neuropathies (EPODIN) and Chair of the ERN NMD Educational Board.
REGISTER NOW: ESE Talks…Rare Diseases – Genetic endocrine tumours with a focus on pancreatic neuroendocrine tumours (NETs) – a joint webinar with ESE, Endo-ERN and ESPE
Save the date in your calendar and check back for more information. Or register for our newsletter to be kept up-to-date.
