New study in patients with Smith-Lemli-Opitz syndrome
A study published in Biomolecules explores the biochemical and clinical effects of Vitamin E in Hungarian SLOS patients.
New study in patients with Smith-Lemli-Opitz syndrome Read More »
Medics4RareDiseases and MetabERN to announce a mutual collaboration
Some exciting news to share! MetabERN and Medics4RareDiseases are eager to combine their efforts, establishing future collaboration.
Medics4RareDiseases and MetabERN to announce a mutual collaboration Read More »
5th International Symposium on UCD | 22-24 September 2021
The 5th International Symposium on UCD will take place as a virtual satellite to the International Congress on Inborn Errors of Metabolism (ICIEM).
5th International Symposium on UCD | 22-24 September 2021 Read More »
ERN Exchange programme – knowledge sharing among ERN members
The programme is beginning. The ERN Exchange Programme aims at harmonising specific knowledge within the ERNs and reducing gaps in expertise.
ERN Exchange programme – knowledge sharing among ERN members Read More »
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021
An emergency letter and knowing how to use it can prevent life-threatening situations and will optimize communications between parents and doctors.
EMERGENCY PROTOCOLS FOR PATIENTS WITH FAOD OR GSD | 22 JUNE 2021 Read More »
European Reference Networks: challenges and opportunities
European Reference Networks (ERNs) were founded on the principle that many rare disease (RD) issues are pan-European and any single Member State cannot solve them alone.
European Reference Networks: challenges and opportunities Read More »
Generic Emergency Protocol: Feedback Needed
Having an emergency letter and knowing how to use it can prevent life-threatening situations and will optimise communications between parents and doctors.
Generic Emergency Protocol: Feedback Needed Read More »
Training Course to Foster Solutions of Undiagnosed Rare Disease Cases
Istituto Superiore di Sanità (ISS), in collaboration with EJP RD, have organised an international training course regarding undiagnosed rare diseases. 2 – 14 April 2021. This workshop is online with a web-conferencing format.
Training Course to Foster Solutions of Undiagnosed Rare Disease Cases Read More »
The EJPRD Rare Disease Day Video is online!
EJPRD Rare Disease Day video: contributors answer the web’s most search questions about rare diseases in a new video (subtitles available).
The EJPRD Rare Disease Day Video is online! Read More »
Rare Disease Day Freiburg | Webinar | 26 February 2021
Rare Disease Day webinar presented by Freiburg Centre for Rare Diseases on 26th February 2021 from 15:00 – 17:15.
Rare Disease Day Freiburg | Webinar | 26 February 2021 Read More »
innovation projects in clinical trials methodologies
In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be organised on the 25th of January 2021. The meeting will take place online from 15:00 to 18:30.
innovation projects in clinical trials methodologies Read More »
Manifesto for a European Health Union
New manifesto outlines five key goals for establishing a European Health Union to enhance healthcare solidarity and patient protection.
Manifesto for a European Health Union Read More »
