The International Congress on Porphyrins and Porphyrias 2019 in Milan, will take place at the University of Milan from 8th to 11th September 2019.
International Congress on Porphyrins and Porphyrias 2019 Read More »
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 »
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 »
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 »
The EUProtects campaign showcases how European Reference Networks demonstrate EU collaboration in healthcare protection.
EUProtects Campaign Read More »
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 »
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 »
The E.S.PKU Conference 2018 will take place, at Hotel NH Venezia Laguna Palace, Venice, Italy, from November 1st to November 4th.
E.S.PKU Conference, 1-4 November 2018 Read More »
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 »
A collaborative research questionnaire developed to advance understanding of immune system function in CDG patients and caregivers.
Patient Centred Research Tool Read More »
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 »
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 »
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