International Pemphigus & Pemphigoid Foundation- 2021 Patient Education Conference
On 24 October 2021
At : Online
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On 24 October 2021
At : Online
On 26 October 2021
At : Online
On 26 October 2021
At : Online
On 27 October 2021
At : Online
On 27 October 2021
At : Online
From 27 to 28 October 2021
At : Leiden, Netherlands
From 28 to 29 October 2021
At : Online
From 28 to 30 October 2021
At : Copenhagen, Denmark
From 29 to 30 October 2021
At : Online
From 08 to 09 November 2021
At : Online
From 08 to 10 November 2021
At : Online
From 08 to 13 November 2021
At : Online
On 09 November 2021
At : Online
From 10 to 11 November 2021
At : London, United Kingdom
From 10 to 12 November 2021
At : Online
On 12 November 2021
At : Zurich, Switzerland
From 12 to 13 November 2021
At : Sydney-Australia
From 15 to 18 November 2021
At : Barcelona, Spain
From 16 to 17 November 2021
At : Online
On 17 November 2021
At : Online
On 18 November 2021
At : Online
From 18 to 19 November 2021
At : Online
From 18 to 20 November 2021
At : Copenhagen, Denmark
On 25 November 2021
At : Online
On 30 November 2021
At : Online
On 04 December 2021
At : Paris, France
On 14 December 2021
At : Online
On 15 December 2021
At : Online
From 10 to 11 February 2022
At : Online
On 18 March 2022
At : Munich, Germany
From 30 March to 01 April 2022
At : Tutzing, Germany
From 03 to 06 April 2022
At : Dublin, Ireland
From 27 to 29 April 2022
At : Vilamoura, Portugal
From 07 to 10 May 2022
At : Helsinki, Finland
From 07 to 09 June 2022
At : Paris, France
From 27 June to 01 July 2022
At : Online
The Student Voice Prize is an annual, international essay competition that focuses on raising the profile of rare disease within the medical field, particularly with medical students, nurses and scientists who may never have considered working in rare disease.
The following categories are encourage to apply:
Applicants are invited to answer one essay question in 1,500 words or less.
The deadline to submit the essay is on 17th November 2021 by 12:00 pm GMT.
EHDEN Consortium announces its 5th Open call targeted towards data custodians of Electronic Health Records, Claims, Hospital and Registry data across Europe, supporting the mapping of their data to the OMOP common data model to accelerate research and healthcare decision-making.
Data Partners can benefit from up to a maximum of € 100 000 funding that will be made available via a €17 million “Harmonisation Fund”.
The deadline for applications is 15 November 2021 by 17:00 CET.
The EJP RD Networking Support Scheme (NSS) call is open.
The first aim is to encourage sharing of knowledge on rare diseases and rare cancers of health care professionals, researchers and patients. The second aim is to enable or increase the participation of usually underrepresented countries in Europe (see below) in new and existing research networks. The scheme will provide financial support to applicants to organize workshops or conferences. The focus of these workshops or conferences should be (the implications of) research results and innovative solutions in compliance with the vision set by the International Rare Diseases Research Consortium (IRDiRC) : "“enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention”.
In this Networking Support Scheme applicants can apply for a budget of a maximum of 30,000 € per event.
The collection date is December 2, 2021 at 14.00 (CET).
The most important change from June 3, 2021 is that applicants can choose between the format of a face-to-face meeting, an online meeting or a hybrid meeting if networking is secured. The Call documents have been changed acoordingly.
Please note: Are you planning to apply for the next rounds of the Networking Support Scheme? Please note that the documents have been updated in June 2021. Take care not to use earlier documents as they will not be eligible anymore.
The Myotubular Trust (UK Registered Charity No: 1137177) was set up in 2006 to raise money for research to find a cure and / or treatment for any of the genetic forms of centronuclear and myotubular myopathy.
There are a number of genetically distinct forms of centronuclear and myotubular myopathy. The commonest is x-linked, usually called myotubular myopathy, affecting in the vast majority of cases, only boys. It is also usually the most severe, presenting in the new-born period and there are associated breathing and swallowing difficulties in addition to the general muscle weakness. The other forms are either dominant or recessive in inheritance, are usually, but not always, milder, and vary widely.
Myotubular Trust is holding a 2021 call for research grants. We will require completed applications by 1700 hours GMT Friday 29th October 2021. We anticipate making awards in April 2022.
We are looking to fund projects that will increase the clinical understanding of, and help find a cure and / or a treatment for any form of centronuclear and myotubular myopathy (congenital X-linked recessive; congenital autosomal recessive; autosomal dominant), focusing on research that would not generally be funded by public or industrial funding sources. This call will be open to international applications.
Applications may be made for:
We will consider applications from the Principal Investigator for projects of 2-3 years duration to be carried out by a post-Doctoral researcher, or PHD student
The Fellowship scheme is designed to support early career scientists to help them to develop their independence. Applicants will have identified a host institution and will be undertaking a project of 3-4 years duration. This is not the same as a post doc position and should be designed and led by the fellowship applicant but with the support of the host lab.
In particular we would like to encourage the application of novel approaches and technologies to research into myotubular and centronuclear myopathy. We are interested in all aspects of translational research, including, but not limited to, interventional trials; studies that shed light on genotype/phenotype inter-relationships; studies on modifiers of disease progression and collaboration between different medical disciplines and / or different research institutions. We are also willing to consider applications which involve joint funding of new projects with other organisations.
Myotubular Trust’s Scientific Advisory Board (SAB) is chaired by Professor Francesco Muntoni of The Institute of Child Health, University College London. The SAB makes recommendations to the Myotubular Trust Trustees on which projects to fund, based on scientific assessment and peer review.
As part of the European Joint Programme on Rare Diseases (EJPRD), TEDDY Network is organising the first paediatric expert patients training workshops in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation.
The workshop aims at preparing young patients to actively participate in scientific research and play an important role in improving research and healthcare services for all patients by contributing with their own specific experience. It is addressed to patients with a chronic rare disease, aged from 12 to 18, interested in the themes of health, biomedical research, healthcare, and children rights.
The workshop will take place online from November 2021 to February 2022. Applications can be sent by 30 October 2021.
The preceptorship medical course- Optimising Care in MPS Disease will be held on 11-12 November 2021 at The Nowgen Centre, Manchester Royal Infirmary, United Kingdom.
The course will provide a better understanding of MPS and challenges in patient management that requires a multi-disciplinary approach and is intended for clinicians and nurses.
The IRDiRC Diagnostics Scientific Committee (DSC), Interdisciplinary Scientific Committee (ISC), and Funders Constituent Committee (FCC) have set up a joint Task Force to identify challenges and opportunities in rare diseases research focusing on primary care.
IRDiRC is currently assembling a team of experts to populate this Task Force and is specifically looking for members with expertise/experience in one or more of the following areas:
Applications are open until 29 October 2021.
The European Health Data & Evidence Network (EHDEN) and the European Patients’ Forum (EPF) offer a free course to patient organisations on real world data. The course focuses on data protection and the vital role they can play in the healthcare ecosystem and health research.
The course is available upon registration through the EHDEN Academy.
The Translational Medicine Explained (TMex) Winter School is a 5-day online workshop organized by the European Infrastructure For Translational Medicine (EATRIS) and is intended for PhD students in the second half of their PhD, early postdocs and other young scientists involved in biomedical research.
The course will take place on 8-12 November 2021.
A new series of Paediatric Surgery Courses organized by the Radboud UMC – Amalia Children’s Hospital (Nijmegen, The Netherlands) will be held online in 2022.
The courses will take place on the following dates:
The ERN EpiCARE has developped new e-learning modules in collaboration with the ILAE Academy. The modules are dedicated towards professionals who wish to practice diagnosis of rare and complex epilepsies. The first online six modules are patient-centered cases.
This 3-part workshop is for academic researchers and research funders, policymakers and industry scientists interested in drug repurposing. It is jointly organised by Radboud UMC, EATRIS ERIC, Fondazione Telethon and French Foundation for Rare Diseases as part of the European Joint Programme for Rare Diseases.
Next session is on 28 October 2021.
The European Joint Programme on Rare Diseases has launched an online academic education course on rare diseases research topics. The development of the courses is coordinated by the Foundation for Rare Diseases, one of the EJP RD partners.
The first MOOC (Massive Open Online Course) “Diagnosing Rare Diseases: from the Clinic to Research and back” started on April 26th. This course aims to gain insight into patients’ experiences and discuss key issues relating to this topic.
It has been co-developed with representatives from ERN Ithaca (Prof Laurence Faivre, Dijon University Hospital), ERN Genturis (Dr Chrystelle Colas, Curie Institute) and Foundation for Rare Diseases (Roseline Favresse).
This course is designed for individuals with a keen interest in diagnostic research and rare diseases. While primarily designed for medical students and PhD/post-doc students in biomedical sciences, it will also be of interest to Patients Advocacy Organisations’ representatives, Healthcare professionals or paramedics who want to further their knowledge of rare diseases diagnosis.
This course will cover the following topics :
Because of the pandemic covid-19, the 8th Rare Diseases Summer School has been postponed and will be held from 13 July to 15 July 2022 in Kartause Ittingen. The rare diseases summer school is part of the curriculum of the PhD programs. It aims to provide an environment for informal exchange between PhD students and experts in the field of rare disease research. The application procedure will open in 2022.
INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts.
The next lectures will be held on:
Please send your CV and cover letter to jobs.orphanet@inserm.
Please send your CV and cover letter to Charlotte Gueydan at jobs.orphanet@inserm.fr
Please send your CV and cover letter with the reference US14-2021-01 to:
Charlotte Gueydan
Tel : +33 (0)1 56 53 81 41
jobs.orphanet@inserm.fr
You will be responsible for the implementation and developpement of an e-learning project on clinical genetics. This project is based on the Moodle platform, and it is called APOGeE Project (A Practical Online Genetics e-Education), developed in the framework of the European Reference Network (ERN) ITHACA.
Please send your application (CV + cover letter) by e-mail to anne.hugon@aphp.fr and marie.vincke@aphp.fr