The primary aim of the Fabry expert meeting is to facilitate collaboration between patient organisations around the world to support those affected by Fabry disease.
The MPS Society is holding an expert meeting in Northampton, England.
The annual meeting will be focusing on the achievements of the first year of MetabERN activities, the definition of the final report, the starting and planning of the second year of activities...
The European Cystinosis Conference will take place in Berlin this year between the 13th and 15th of July.
This event is taking place in Porto (Centro Materno Infantil do Norte), and is going to count with the presence of Prof Jaak Jaeken - the doctor who first diagnosed CDG in 1980.
This symposium, held from the 5th – 9th of February 2018, is designed for basic, translational and clinical researchers, patient advocacy groups, clinicians [...]
Rare Disease Day takes place on the last day of February each year. It is an international event, which aims to raise awareness amongst the general public and decision-makers.
The Portuguese Association for CDG (APCDG) are attending the USA CDG Family Conference. They will be giving a talk on their international research network CDG & Allies - Professionals and Patient Associations International Network (CDG & Allies- PPAIN).
The 1st MetabERN meeting with Patient and Family Associations, which will be held at the Frankfurt Lindner Hotel, Germany, on 13th January 2018. The opinion of patient and family organisations is highly valued by the MetabERN as to build the foundation for developing long-term activities and programmes centred around high-quality patient care. The meeting represents […]
Date: 10-12 May, 2018 Venue: Vienna, Austria The European Conference on Rare Diseases 2018 (https://www.rare-diseases.eu) Co-organised by EURORDIS (www.eurordis.org), DIA, and for the first time Orphanet, the theme of this edition of the conference will be “Rare Diseases 360°: Collaborative Strategies to leave no-one behind”. Importantly European Reference Networks will be a transversal topic running through […]