2022 Global Rare Disease Day Event- RARE DISEASES: A GLOBAL PRIORITY FOR EQUITY
On 28 February 2022
At : Online and in Dubai, United Arab Emirates
Events
International Symposium for Researchers and Clinicians on Wiskott Aldrich Syndrome- WAS2022
On 18 March 2022
At : Munich, Germany
11th Scientific Congress of the International Paediatric Transplant Association- IPTA 2022
From 26 to 29 March 2022
At : Prague, Czech Republic
20th International Vasculitis and ANCA Workshop
From 03 to 06 April 2022
At : Dublin, Ireland
International Primary Immunodeficiencies Congress – IPIC 5th Edition
From 27 to 29 April 2022
At : Vilamoura, Portugal
14th European Paediatric Neurology Society Congress- EPNS 2022
From 28 April to 02 May 2022
At : Glasgow, UK
ECTS 2022: 49th edition of the European Calcified Tissues Society Congress
From 07 to 10 May 2022
At : Helsinki, Finland
European Congress of Rheumatology - EULAR 2022
From 01 to 04 June 2022
At : Online and in Copenhagen, Denmark
World Congress on Rare Skin Diseases
From 07 to 09 June 2022
At : Paris, France
13th International Congress on Autoimmunity
From 10 to 13 June 2022
At : Athens, Greece
The European Human Genetics Conference- ESHG 2022
From 11 to 14 June 2022
At : Vienna, Austria
7th Annual TREAT-NMD International Conference
From 16 to 17 June 2022
At : Vancouver, Canada
8th Congress of the European Academy of Neurology – Europe 2022
From 25 to 28 June 2022
At : Vienna, Austria
European Conference on Rare Diseases & Orphan Products- ECRD 2022
From 27 June to 01 July 2022
At : Online
International Congress on Neuromuscular Diseases- ICNMD 2022
From 05 to 09 July 2022
At : Brussels, Belgium
11th International Prader-Willi Syndrome Organisation Conference-IPWSO
From 06 to 10 July 2022
At : Limerick, Ireland
FENS Forum 2022
From 09 to 13 July 2022
At : Paris, France
7th International Myology Congress
From 12 to 15 September 2022
At : Nice, France
3rd International Workshop on Klinefelter Syndrome, Trisomy X, and XYY
From 12 to 14 September 2022
At : Leiden, the Netherlands
From Paradigms to Paradoxes in Immunity and Immunopathology’ (PPII) international conference
From 06 to 08 October 2022
At : Freiburg, Germany
Third International Summit on Human Genome Editing
From 06 to 08 March 2023
At : London, United Kingdom
The Translational Science of Rare Diseases - From Rare to Care IV
From 03 to 05 May 2023
At : Tutzing, Germany
Grants
EJP RD Networking Support Scheme (NSS) Funding Opportunity
The aim of the NSS call is to encourage knowledge-sharing between health care professionals, researchers and patients on rare diseases and rare cancers, as well as to enable or increase the participation of usually underrepresented countries in Europe in new and existing research networks. Eligible applicants are health care professionals, researchers, and patient advocacy organisations from the following countries involved in the EJP RD: Armenia, Austria, Belgium, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Georgia, Greece, Hungary, Ireland, Israel, Italy, Latvia, Lithuania, Luxembourg, Malta, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, the Netherlands, Turkey, United Kingdom. There is no limit on the number of participants per event; however, the maximum budget that can be requested is € 30,000 per networking event.
The NSS has been expanded to include online and hybrid networking events that can now be funded in addition to face-to-face events. A hybrid networking event consists of a group of participants networking face-to-face at a specific location together with other participants networking online.
Next collection date: 1 March 2022
FDA funding opportunity for rare disease research
The Food and Drug Administration’s (FDA) Office of Orphan Products Development (OOPD) has announced a grant to support efficient and innovative natural history studies that advance medical product development in rare diseases with unmet needs. The funding opportunity announcement is entitled “Efficient and Innovative Natural History Studies Addressing Unmet Needs in Rare Diseases (R01) Clinical Trials Not Required”. The purpose of this grant is to address critical knowledge gaps and facilitate rare disease product development.
The receipt dates for this funding opportunity are 15 February 2022 and 13 February 2024.
Funding opportunities for Patient-Partnered Collaborations from the Chan Zuckerberg Initiative
The Chan Zuckerberg Initiative (CZI) invites applications from collaborative teams bringing together patient-led rare disease organizations and research teams for 4-year research projects aimed at advancing our understanding of the fundamental science of rare diseases across two requests for applications (RFA):
- The Patient-Partnered Collaborations for Single-Cell Analysis of Rare Inflammatory Paediatric Disease RFA aims to support the application of single-cell biology methods to rare inflammatory paediatric diseases in order to clarify cellular mechanisms of disease, improve understanding of disease heterogeneity, identify biomarkers, and improve diagnosis.
- The Patient-Partnered Collaborations for Rare Neurodegenerative Disease RFA aims to advance the understanding of the pathophysiology and mechanistic underpinnings of rare neurodegenerative and neurological disorders.
Applications for these two RFAs are open until 24 May 2022.
Courses and educational initiatives
EJP RD training on strategies to foster solutions of undiagnosed rare disease cases
The International Course “Training on strategies to foster solutions of undiagnosed rare disease cases” is part of a series of training activities proposed by the EJP RD. The course will provide participants, through the presentation of sample use cases that have long eluded diagnosis, with useful tools, instruments and knowledge on novel strategies to foster solutions of undiagnosed RD cases. Moreover, the course will facilitate networking among professionals involved in undiagnosed rare conditions.
The course will take place online on 11– 13 April 2022 and registration is open until 6 March 2022.
EURORDIS Open Academy
The EURORDIS Open Academy provides courses to empower patient advocates with knowledge and skills to take part in patient engagement roles with all stakeholders and to advocate for rare diseases on a European and national level.
Trainings are delivered in English and comprise-learning modules, pre-training webinars and face-to-face/online intensive days.
RareLaunch programme
NORD’s RareLaunch programme provides an accessible educational platform that allows an individual to explore the steps to start a nonprofit and/or to engage in starting or expanding research efforts as a nonprofit leader. Twi courses are available, Forming a Foundation and Research Ready. Forming a Foundation provides education and training for interested patients and caregivers looking to form rare-disease-focused nonprofits. Research Ready supports the efforts of patient organizations to effectively prepare for scientific research and the creation of rare disease registries. Both courses emphasize capacity building and expanding confidence at a pivotal stage in a rare disease community’s growth and development.
EJP RD Funded ERN Training Workshops
The EJP-RD is holding workshops aiming at training ERN researchers and clinicians in relevant innovative themes with a cross-ERN added value. These 2-days ERN workshops are open to interested persons (clinicians/scientists) affiliated to ERNs or Affiliated Partner Institutions.
Training themes may include innovative research methodologies, diagnostic research methodologies, interdisciplinary treatment approaches, such as gene therapy and transplantation, etc. Topics have to be proposed by the ERNs or by investigators belonging to EJP RD beneficiary institutions. Three workshops are already planned in 2022 and registrations are now open.
ERN EpiCare e-learning modules
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.
The 8th Rare Diseases Summer School
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.
International Neurofibromatose Educational Resources: Masterclasses in NF
INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts.
The next lecture will be held on:
- 17th March 2022, 6pm CET:
- Cognition and Behaviour in NF1: Phenotype and Treatment Approaches
- Chaired by Shruti Garg, Royal Manchester Children’s Hospital, United Kingdom
ERN-Skin: Series of webinars
The ERN-Skin launches a series of scientific webinars on rare skin diseases. Each ERN-Skin thematic group organizes a one hour session, with 30 minutes presentation and 30 minutes discussion.
The next webinar will be held on:
- 29th March 2022, 1pm - 2pm CET :
- Autoimmune Bullous diseases
- Autoimmune Bullous diseases
Job opportunities
Head of coordination of the international database of rare disease expertise- Team Leader
Please send your CV and cover letter to:
jobs.orphanet@inserm.fr
Administrative Assistant
Please send your CV and cover letter to:
jobs.orphanet@inserm.fr
Project Manager "Nomenclature and Terminology Alignments"
Please send your CV and cover letter to:
Houda Ali
Tel : +33 (0)1 56 53 81 41
jobs.orphanet@inserm.fr
Orphanet Nomenclature & rare diseases and X-eHealth Project Manager
Please send your CV and cover letter to jobs.orphanet@inserm.fr
Head of documentation resource - Clinical Signs
Please send your CV and cover letter to:
jobs.orphanet@inserm.fr