PRELIMINARY SCIENTIFIC programme
Sunday 23 August
| 15:00 - 21:30 | INFORM Meeting Part I (registration at INFORM – limited places, venue Hilton Helsinki Kalastajatorppa, NOT Messukeskus) |
Monday 24 August
| 08:00 - 17:30 | INFORM
Meeting Part II (registration at INFORM – limited places, venue Hilton Helsinki
Kalastajatorppa, NOT Messukeskus) |
| 08:00 - 18:00 | UCD
Guideline group meeting (by invitation only) |
| 10:00 - 12:00 | eHOD (by invitation only) |
| 12:00 - 14:00 | Recon4IMD (by invitation only) |
| 13:00 - 15:00 | eHOD (by invitation only) |
| 13:00 - 16:00 | SSIEM Dietitians’ Group Academy Review: addressing dietetic challenges (open to all) Introduction: Building on the key insights from virtual DG Academy courses, this session will feature our expert course speakers to address the latest clinical challenges and dietary management for Glutaric Aciduria Type 1 and Hepatic Glycogen Storage Disorders. Chair: Anne Daly (United Kingdom) 13:00-13:10 Welcome and introduction - Alice Dianin (Italy) 13:10-13:30 Joanna Gribben (United Kingdom) 13:30-13:50 Alessandro Rossi (Italy) 13:50-14:15 Panel discussion and Q&A Panelists: Anne Daly (United Kingdom), Minna Similä (Finland), Jessica Kopesky (United States) 14:15-14:45 30 minutes break 14:45-15:05 Sarah Cawtherley (United Kingdom) 15:05-15:25 Corrie Timmer (Netherlands) 15:25-15:50 Panel discussion and Q&A Panelists: Anne Daly (United Kingdom), Minna Similä (Finland), Jessica Kopesky (United States) 15:50-16:00 Wrap up and end of the meeting |
| 14:00 - 16:00 | MetabERN plenary meeting (by invitation only) |
| 16:00 - 19:00 | SSIEM Council meeting (by invitation only) |
| 16:00 - 18:00 | MetabERN
meetings (by invitation only)
|
| 16:30 - 20:30 | ERNDIM Board meeting (by invitation only) |
Tuesday 25 August
| 8:00 - 12:00 | UCD Guideline group meeting (by invitation only) |
| 08:15 - 10:00 | Introductory session by the local organizing committee: Brief talks on clinic, lab and diet for those who are new to the field and to the SSIEM (open to all) |
| 08:30 - 10:35 | SSIEM
Dietitians’ Group (DG): Nutrition and Dietetics session (open to all) Chairpersons: Camilla Caroee (Denmark); Alexander Hoeller (Austria) 08:30-08:55 Dietary management of Urea Cycle Disorders across the lifespan: Consensus and Controversies in practice Krista Viau (United States) 08:55 – 09:20 Lysinuric Protein Intolerance: metabolic challenges and dietary management Harri Niinikoski and Katrin Strengell (Finland) 09:20 – 09:45 Dietary management of Pyruvate Dehydrogenase Deficiency Rachel Skeath (United Kingdom) 09:45 – 10:10 Point-of-Care testing for blood phenylalanine: Impact on clinical decision-making in PKU Alex Pinto (United Kingdom) 10:10 – 10:35 Protein substitutes used in the treatment of Phenylketonuria distinctly modulate gut nutrient absorption and bacterial growth: an in vitro study Catarina Rodrigues (Portugal) |
| 08:30 - 10:35 | SSIEM Adult Metabolic Physicians’ Group (AMPG): Tailoring and discontinuation of therapy in adulthood (open to all) 08:30-08:35 Opening of the session (Mirjam Langeveld) 08:35-10:00 Discontinuation of ERT for lysosomal storage disorders Chair: Sandra Sirrs (Canada) Introduction Talks 1. Ethical considerations regarding discontinuation of enzyme replacement therapy Hans-Jürgen Christen (Germany) 2. Progression of cardiac manifestations of Fabry disease despite enzyme replacement therapy Bram Veldman (Netherlands) 3. What happens if we discontinue enzyme replacement therapy in Fabry disease? Maud Jansen (Netherlands) 4. Discontinuation of ERT in Pompe disease Lianne Potters (Netherlands) 10:00-10:35 Debate: “ERT should be discontinued in patients with Fabry disease and advanced fibrosis” For / against: Mirjam Langeveld (Netherlands)/ Rick Steeds (United Kingdom) Closing of the session: Sandra Sirrs (Canada) 10:35-11:00 coffee break (switch to room with the Dieticians Group) |
| 9:00 - 10:30 | ERNDIM Workshops (by invitation only) |
| 9:00 - 13:00 | JIMD Editorial Board Meeting (by invitation only) |
| 11:00 - 12:00 | SSIEM DG & AMPG: Relaxation of PKU treatment in adulthood Collaborative roundtable with the Adult Metabolic Physicians and Dieticians Group Lead: Elaine Murphy (United Kingdom) and Alice Dianin (Italy) Panellists: Peter Burgard, Anita MacDonald, Robin Lachmann, Francjan van Spronsen, Kirsten Ahring |
| 11:00 - 12:45 | ERNDIM Open meeting |
| 12:35 - 13:45 | SSIEM Adult Metabolic Physicians’ Group business meeting (SSIEM AMPG members only) |
| 12:45 - 13:45 | Satellite meetings by the sponsors |
| 14:00 - 14:10 | Opening of the Symposium |
| 14:10 - 14:40 | Opening Lecture: From the zygote to a person: genes, epigenetics, environment, and chance Juha Kere (Sweden) |
| 14:40 - 15:40 | Plenary 1 - The Foeto-Maternal Unit and Inborn Errors of Metabolism (IEM)
|
| 16:00 - 17:45 | SSIEM, MetabERN and ISNS session on Newborn screening (open to all) |
| 16:15 - 17:45 | Parallel abstract sessions A
|
| 17:50 - 18:30 | Garrod Award Lecture Andrew Morris (UK) |
| 18:30 - 21:00 | Welcome Reception, Posters |
| 19:30 - 20:30 | YSSIEM (Young SSIEM) Inaugural Meeting (open to all) |
Wednesday 26 August
| 07:30 - 08:30 | Speed Mentoring (details to follow) |
| 07:30 - 08:30 | Satellite meetings by the sponsors |
| 08:00 - 08:30 | Lab Talk by Philippa Mills (UK) |
| 08:45 - 10:15 | From presentation to diagnosis: a case-based education session with the SSIEM Educational and Training (ETAC) Academy |
| 08:45 - 10:15 | Parallel abstract sessions B
|
| 10:30 - 14:00 | Patient advocacy group (PAG) session: Making PAG work sustainable |
| 10:40 - 12:15 | Plenary 2 - New Diseases and Mechanisms
|
| 12:00 - 14:00 | Drug Repurposing Consortium meeting |
| 12:20 - 13:00 | ICIEM Organising Committee meeting |
| 12:20 - 13:00 | SSIEM Advisory Council & Council meeting (by invitation only) |
| 13:00 - 14:00 | SSIEM Annual General Meeting (AGM) (SSIEM members only) |
| 14:00 - 16:00 | SSIEM Dietitians’ Group business meeting (SSIEM DG members only) 14:00-14:15 Welcome and report from the SSIEM DG Committee Alice Dianin (Italy) and Charlotte Ellerton (United Kindgom) 14:15-14:45 Metabolic dietitians’ education and workforce project Martina Tosi (Italy) and Fiona White (United Kindgom) 14:45-15:25 short oral presentations and discussion: - Use of Glycomacropeptide (GMP) in Maternal PKU; a multicentre prospective observational study Charlotte Ellerton (United Kingdom) - Impact of Low Phenylalanine Free Diet on Compliance and Metabolic Control in Tyrosinemia Type 1 Esma Uygur (Turkey) - Infantile-onset lysosomal acid lipase deficiency – impact of fat intake on growth and duodenal histology Fiona White, United Kingdom 15:25-15:55 Celebration of 30 years of European Metabolic Dietitians and SSIEM Dietitians Group 15:55-16:00 Closing of the session |
| 14:00 - 16:00 | Ensuring
Patient Access to Innovation in Rare Diseases (details to follow) |
| 14:15 - 15:45 | Parallel abstract sessions C
|
| 16:00 - 17:30 | Plenary 3 - Physics and Mathematics Enter the World of IEM
|
| 17:30 - 18:30 | Poster Walk |
| 18:30 - 20:30 | GalNet meeting (by invitation only) |
| 18:30 - 19:30 | Satellite meetings by the sponsors |
Thursday 27 August
| 07:30 - 08:30 | Speed Mentoring (details to follow) |
| 07:00 - 8:00 | EHOD
– CBS guidelines group (by invitation only) |
| 07:30 - 08:30 | Satellite meetings by the sponsors |
| 08:00 - 08:30 | LAB Talk by Sean Froese (CH) |
| 08:45 - 10:15 | Plenary 4 - OMICS data help us understand pathology in metabolic pathways
|
| 10:30 - 12:00 | Parallel abstract sessions D
|
| 11:15 - 12:15 | JIMD Editors meeting (by invitation only) |
| 12:30 - 13:30 | Plenary 5 - Mitochondria Now and Forever
|
| 13:45 - 15:15 | Training in IEM: A roundtable discussion (details to follow) (paed/adult clin, clin lab, diet, nursing) |
| 13:45 - 15:15 | Parallel abstract sessions E
|
Friday 28 August
| 08:00 - 09:00 | ICIEM Scientific Committee meeting |
| 09:00 - 10:00 | Late-Breaking News: 4 talks |
| 10:30 - 12:00 | Plenary 6 - Looking Forward
|
| 12:00 - 12:45 | Komrower Lecture
|
| 12:45 - 13:00 | Awards Ceremony (LBN, posters) |
| 13:00 | Closing remarks |