Read the February-March edition of the Endo-ERN newsletter now! It features a report on our third annual General Assembly, the first EndoRARE webinar, past meetings, and upcoming meetings! Kontynuuj czytanie
Recognising the outstanding achievements and exceptional work of people making a difference for the rare disease community.
Taking place in February to mark the occasion of Rare Disease Day, the EURORDIS Black Pearl Awards celebrate the inspirational qualities of people living with a rare disease along with those who go that extra mile to make a difference to their lives.
The black pearl symbolises these unique individuals, organisations and companies who demonstrate an incredible combination of hard work and dedication in their daily lives.
The eleventh edition of the Awards will take place online on TUESDAY, 8th FEBRUARY 2022 from 18:00 until 19:30 CET and will bring together persons living with a rare disease, patient advocates, policy makers, scientists, healthcare professionals, industry representatives, and more.
In the context of EJP RD’s ERN Workshops, an in-person workshop titled „Trans-ERN Working Group for Spina Bifida (Spinal Dysraphism): Workshop for future research on innovative diagnostics and interdisciplinary treatment” aimed at sharing participants’ expertise on research in different areas of spinal dysraphism and opening the way to new research projects is being organised by Centre de Référence Spina Bifida – Dysraphismes C-MAVEM, Centre Hospitalier Universitaire de Rennes.
The face-to-face event (in-person on site) will take place over two days on March 31st – April 1st, 2022 at the Centre Hospitalier Universitaire de Rennes in Rennes, France.
The workshop is open by prior registration and selection to geneticists, fetal medicine experts, neurosurgeons, rehabilitation medicine specialists, pediatric and adult urologists, pediatricians who are employees of or affiliated to an ERN-Full Member or affiliated Partner institution.
The training workshop is free of charge. The workshop will consist of interactive presentations and discussions on different areas of interest.
Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 15th, 2022 of their selection.
More information and registration click here.
EuRRECa is holding its 4th annual meeting online on Monday 14th February 2022. This meeting will showcase the activities of the EuRRECa project which was launched in 2018 and the online platform allows us to welcome all professionals, scientists and patients and patient groups who have an interest in rare endocrine and bone conditions.
Read more about the New Members, Endo-ERN General Assembly, Endo-ERN Clinical Exchange programme and much more!
In the context of EJP RD’s ERN Workshops, a face-to-face workshop on “Endocrine cancer: A challenge in adults and children” aimed at giving an update on the molecular background and clinical management of rare endocrine malignancies is being organised by Prof. Barbara Jarzab of the M. Sklodowska-Curie National Research Institute.
The in-person event will take place on May 4th, 2022 at the M. Sklodowska-Curie National Research Institute in Gliwice, Poland.
The workshop is open by prior registration and selection to endocrinologists, oncologists, surgeons, radiotherapists, internists and pediatricians, pathologists, radiologists, nuclear medicine specialists who are employees of affiliated to an ERN Full Member or affiliated Partner institution.
The training workshop is free of charge. Travel and hotel expenses will be reimbursed for all selected (max 20) ERN participants. Lunch and dinner will be provided on site for all participants.
Registration closes on January 28th, 2022 and those selected to participate from among the applicants will be informed by February 28th, 2022 of their selection.
More information and registration here:
Professor Faisal Ahmed has been appointed Professor of Medicine, in specific in Endocrine Registries, at Leiden University.
More information about about the symposium and the lecture will follow here.
|Event||INAUGURAL LECTURE ‘Finding strength in numbers’ PROFESSOR FAISAL AHMED|
|Data||4 lipcath, 2022|
|Lokalizacja||Leiden, the Netherlands|
Read more about the upcoming webinars, the second Endo-ERN Clinical Exchange program participant and much more!
The second successful Endo-ERN exchange has been completed.
The Endo-ERN Exchange Programme participant Anna Strandqvist, a clinical psychologist working at Karolinska University Hospital in Stockholm participated in an exchange visit to share experiences on clinical practice, psychosocial care and standard procedures for psychological assessment of patients with rare conditions within Disorders of Sex development (DSD). The host for the exchange was the clinical psychologist Arianne Dessens, Erasmus Medical Center, Rotterdam and visiting professor at Ghent University. An aim for this cooperation is to establish, increase and strengthen networks for psychologists working with these patients.
This exchange opportunity was very much appreciated and useful in many ways for both the visitor and the host.
There are still enough opportunities for others for an exchange of 5-20 working days.
The Therapies Scientific Committee (TSC), the Interdisciplinary Scientific Committee (ISC) and the University of Twente, the Netherlands, are jointly establishing a Working Group to explore the role and value of medical devices in rare diseases. The Working Group will primarily focus on devices used for either the treatment of rare diseases, such as implants, and devices used to support physical activities of patients, such as exoskeletons.
The development of “orphan” devices faces scientific and technological challenges, next to the need for an improved clarity regarding the requirements for specific technical and functional needs for each device (development, clinical trial, regulatory aspects). As such, the Working Group aims to create a better understanding and enhanced awareness of device developer’s needs, the standardized outcomes to define user needs for devices, and to offer a groundwork for developing solutions to improve the (regulatory) landscape of MedTech use for rare disease patients.
IRDiRC is looking for members to populate this Working Group with the below expertise in one or more of the following areas:
Patient (representatives), who have previously been involved in medical technology development.
Health care professionals with experience in the use/development of medical devices, including running clinical trials
Medical device design experience (academic and industrial)
Experts in technical file preparation
Regulatory experience for medical devices, from different geographies
Funders with experience on funding medical technology
The usual time commitment includes quarterly 1-hour teleconferences, one face-to-face workshop (1-2 days), and regular email correspondence.
If you are interested in taking part in this activity: Please send a CV, biosketch and letter of motivation (one paragraph each) to the Scientific Secretariat (email@example.com).
Importantly, do not forget to add in the subject of your email the reference of the project (Ref: WG-IRDIRC-MedTech).
Only selected candidates will be contacted. Other applications will be kept for potential future use.