News

EATRIS-Plus Summer School 2023 – Multimodal Biomarkers & Diagnostics

The next  EATRIS-Plus Summer School in Personalised Medicine  will take place in person on 17-20 April 2023 in Lisbon, Portugal.  EATRIS-Plus Summer School in Personalised Medicine is organised within the framework of EATRIS-Plus Project, which is a flagship initiative in personalised medicine, coordinated by EATRIS-ERIC.  The overarching topic of the summer school is multimodal biomarkers and diagnostics. […]

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9th Rare Disease Summer School by ITINERARE

Save the date for the 9th Rare Disease Summer School organized by ITINERARE, a recently established University Research Priority Program of the University of Zurich focusing on “Innovative Therapies in Rare Diseases”. The Summer School will take place at the Kartause Ittingen, Warth (Canton Thurgau) close to Zurich from July 4th to 7th, 2023.  The program includes lectures by national and international rare disease experts on topics […]

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AFM-Telethon International Thematic Call for Projects 2023 focused on: Innovative Mitochondrial Medicine

AFM-Telethon is pleased to announce the launch of its first international call for proposals for Translational Research Projects on « A single therapeutic product for several mitochondrial disorders ». The MitoNice Congress, organized in September 2022 by the AFM-Telethon along with the 7 th International Myology Congress, highlighted that mitochondrial medicine has moved from the […]

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New Request for Applications for FDA Rare Neurodegenerative Disease Grant Program

The U.S. Food and Drug Administration (FDA) announced a new funding opportunity for the FDA Rare Neurodegenerative Disease Grant Program to support efficient natural history studies and/or biomarker studies that fill unmet needs for rare neurodegenerative diseases for children and adults. Through the support of prospective natural history and/or biomarker studies with high quality and interpretable data elements, FDA […]

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Join IRDiRC’s Interdisciplinary Scientific Committee!

The Interdisciplinary Scientific Committee (ISC) is a multi-stakeholder, multi-disciplinary group of experts in rare diseases medical research with a strong expertise in data sharing, registries, biobanks and natural history studies. ISC has one opening for a new member with experience in rare diseases data sharing, ontologies, natural history, biobanking and registries. Interested candidates are invited […]

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The Chinese Organization for Rare Disorders (CORD) organizes the Global Workshop on Access to Rare Disease Diagnosis and Treatment

As Rare Disease Day 2023 is approaching, the Chinese Organization for Rare Disorders invites you to attend the Global Workshop on Access to Rare Disease Diagnosis and Treatment, on 28th February 2023, at 19:00-22:30 Beijing time. Founded in 2013 by Kevin HUANG, the Chinese Organization for Rare Disorders (CORD) functions as a platform, hub and advocacy NGO […]

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Rare Disease Day at NIH Twitter Chat

Don’t miss the Rare Diseases Twitter Chat hosted by NCATS today, February 22, from 1 to 3 p.m. EST. Joni Rutter, PJ Brooks and other experts will answer questions from the community on key topics in the rare diseases space. Follow NCATS’ Twitter account and use #RareDiseasesChat to ask your questions before or during the […]

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Rare Diseases International (RDI) invites you to #SeeRare

Rare Disease International (RDI) has opened the event platform for #SeeRare – the global Rare Disease Day event organized in partnership with the international Rare Disease Day campaign. BE PART OF THE GLOBAL EVENTTo be part of the event, please share a 30-second video introducing your organization and why Rare Disease Day is important to […]

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FDA’s Rare Disease Day 2023

Don’t miss the Rare Disease Day organized by FDA, a virtual public meeting, on February 27th, 2023, 9:00 am – 4:45 pm ET, in global observance of Rare Disease Week. This year’s theme is “Intersections with Rare Diseases – A patient focused event.” Participants will have the unique opportunity to:  Hear directly from the FDA […]

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Europe Rare Disease Summit 2023

The Europe Rare Disease Summit 2023 is just around the corner, this year will be hosted by Bamberg Health in Madrid (Spain) next Wednesday, February 15th, and will bring together local and European government authorities, members of the European Commission and the European Parliament, large public and private hospital groups, research centers, pharmaceutical and patient […]

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