5th International GSD Conference | 14-16 November 2019
The 5th International GSD Conference (IGSD2019), taking place in Porto Alegre from 14-16 November 2019.
5th International GSD Conference | 14-16 November 2019 Read More »
1st MetabERN Annual Meeting 2017: kick off meeting
The 2017 inaugural meeting established MetabERN as the European Reference Network for rare hereditary metabolic disorders.
1st MetabERN Annual Meeting 2017: kick off meeting Read More »
CDG Patient Groups and Advocates
A comprehensive overview of CDG patient advocacy groups and representatives working to advance awareness, research and treatment options.
CDG Patient Groups and Advocates Read More »
EUProtects Campaign
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
Inpda: International Niemann–Pick Disease Alliance
A worldwide alliance of non-profit organizations providing support and advancing research for Niemann-Pick Disease communities.
Inpda: International Niemann–Pick Disease Alliance Read More »
CPMS Webinar For New Users – 20th November 2018
The November 2018 webinar provided essential training for new users of the Clinical Patient Management System platform.
CPMS Webinar For New Users – 20th November 2018 Read More »
E.S.PKU Conference, 1-4 November 2018
The E.S.PKU Conference 2018 will take place, at Hotel NH Venezia Laguna Palace, Venice, Italy, from November 1st to November 4th.
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SAVE THE DATE – LA VOCE DEL PAZIENTE RARO, OCTOBER 26, 2018
The October 2018 Cagliari conference empowered Sardinian rare disease patient associations through training and collaboration.
SAVE THE DATE – LA VOCE DEL PAZIENTE RARO, OCTOBER 26, 2018 Read More »
Patient Centred Research Tool
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
Effective ways of Investing in Health, Expert Panel, 25 September 2018
The September 2018 Expert Panel hearing explored expanding European Reference Networks beyond rare disease healthcare delivery.
Effective ways of Investing in Health, Expert Panel, 25 September 2018 Read More »
NORD Launches RareInsights – 5 Myths About Orphan Drugs
An insightful analysis of five common myths about orphan drugs and their real impact on healthcare systems and rare disease treatment.
NORD Launches RareInsights – 5 Myths About Orphan Drugs Read More »
16th International Conference on Rare Diseases: Understanding Rare Diseases
The June 2018 conference on rare diseases held in Serock brought together experts to explore pathways for better disease understanding.
16th International Conference on Rare Diseases: Understanding Rare Diseases Read More »
