New EJP RD – ERN Workshop on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)

EJP RD News, ERN-Research (ERICA)

In the context of EJP RD’s ERN Workshops, a workshop on “on Fetal and Postnatal multidisciplinary management in Rare Diseases – Myelomeningocele (MMC) and Lower urinary tract obstruction (LUTO)” is being organized by Giovanni Mosiello, Rafal Chrzan, Jean Marie Jouannic, and Giovanni Montini. The in-person event, which aims to train healthcare providers from different ERNs involved in the clinical research on MMC…

Training for patient representatives and advocates on leadership and communication skills

EJP RD News

As part of the training activities proposed by EJP RD, an international course entitled “Training for patient representatives and advocates on leadership and communication skills” is a 2-day training programme that will take place from October 26th – 27th at MUG in Gdańsk, Poland. Registration is currently open but will close on April 26th. More information and registration here.

DEADLINE EXTENDED: EJP RD – ERN Workshop: Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)

EJP RD News, ERN-Research (ERICA)

The deadline for the “Psychological, molecular and administrative aspects of Hereditary breast and ovarian cancer genetic population screening (HBOC GPS)” EJP RD- ERN Workshop has been extended until March 24th. Registration is open here. The in-person event, which aims to educate researchers and clinicians on psychological, molecular and administration aspects of HBOC GPS, will take place on 27-28 April…

New Request for Applications for FDA Rare Neurodegenerative Disease Grant Program

News

Deadline to submit applications: May 4, 2023 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…

Applications for Duchenne Centers Accreditation now open

News

World Duchenne Organization is thrilled to announce that the applications for Duchenne Centers Accreditation are now open. The Accredited Duchenne Centers Program is designed to achieve worldwide uniform and up-to-date care for everyone living with Duchenne muscular dystrophy. Accredited Duchenne Centers provide comprehensive care according to the international care considerations and consensus guidelines. The program…

The 3rd International Conference on Rare Diseases Greek Chapter: Presentations Available

News

The 3rd International Conference on Rare Diseases organized by Rare Diseases Greece (RDG), “95” Rare Alliance Greece and Boussias and supported by EJP RD took place on February 28 & March 1, 2023. The presentations are now available here: https://www.rarediseases-conference.com/history/presentations-2023/ Following the success of the previous two years and having advanced the policy agenda on…

Join IRDiRC’s Interdisciplinary Scientific Committee!

News

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…

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

News

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…