Rare Disease International: Addressing Rare Diseases through Universal Health Coverage
On 12 December 2020
At : Paris-France
Events
ERN ITHACA online board meeting 2020
From 11 to 13 December 2020
At : Dusserldorf - Germany
2020 Rare Drug Development Symposium
On 07 January 2021
At : Pennsylvania - United States
Re (act) International Congress on Research Of Rare And Orphan Diseases
From 14 to 17 January 2021
At : Berlin-Germany
First European Congress on Kawasaki Disease – Onsite face to face sessions and online sessions
From 15 to 17 January 2021
At : Paris-France
EURORDIS Black Pearl Awards
On 25 February 2021
At : Brussels-Belgium
Huntington's Disease Youth Organisation - 1st Young Adult Congress
From 13 to 15 March 2021
At : Glasgow-Scotland
EuRRECa annual meeting 2021
On 13 April 2021
At : Milan-Italia
The Translational Science of Rare Diseases - From Rare to Care IV
From 30 September to 02 October 2021
At : Tutzing-Germany
RVA's biennial National Rare Disease Summit
From 13 to 14 November 2021
At : Sydney-Australia
Courses and educational initiatives
FAIRplus Fellowship Programme
The FAIRplus Fellowship Programme is a training programme in FAIR data management. The FAIRplus programme aimed at developing tools and guidelines for FAIR (Findable, Accessible, Interoperable, Reusable) life science data. Eligible candidates to the training programme are from FAIRplus partner organisations. There are also limited places for applicants from outside FAIRplus progamme (small and medium size of enterprises). Interested candidates will apply by submitting a FAIRification project they will develop during the programme. The programme will start in April 2021, and will last 8 months.
ERN-EURO NMD 021 Translational Summer School
The European Reference Network for rare or low prevalence complex disease (ERN-EURO NMD), in collaboration with the Neuromuscular Network (TREART-NMD), will have their next Summer School in Leiden, Netherlands, from 6 to 10 December 2021. The Summer School aims at facilitating clinical development of therapies for NMDs, and aims to educate clinicians and researchers working in the NMD field on translational therapy development, and outline how networks such ERN-NMD and TREAT-NMD facilitate therapy development.
Grants
EJP RD Call for Proposals 2021: Social sciences and humanities research to improve health care implementation and the day-to-day life of rare diseases patients
The European Joint Programme on Rare Diseases (EJP RD), along with other national and regional funding organisations, will take part in the EJP RD Joint Transnational Call (JTC) 2021, on the topic of “Social sciences and humanities research to improve health care implementation and everyday life of people living with a rare disease”. Multilateral research projects on RD will be funded under the EJP-COFUND action. The list of funding agencies, from European countries, will be issued before the launch of the call.
The call will enable scientists from different countries to build effective collaboration on a common interdisciplinary research project on the basis of complementarities and sharing of expertise, and taking into account a clear future benefit for patients. Research proposals should at least cover one of the 7 areas selected for the 2021 EJP RD call for proposals, including economic impact of rare diseases, studies addressing the impact/burden of the delay in diagnosis and of the lack of therapeutic intervention, development and enhancement of health outcomes research methods in RD, and health and social care services research to improve patient and familial/household health outcomes.
The proposed preliminary timetable of the 2021 EJP RD call for Proposals comprises the five following phases, pre-proposal submission deadline (16th February 2021), invitation to full proposal (end of April 2021), full proposal submission deadline (15th June 2021), deadline for rebuttal (30th July 2021), and notification of funding decision (November 2021). The maximum project duration is three years, and will involve a group of rare diseases or a single rare disease candidate (European definition: a RD affecting not more than five in 10.000 persons in the European Community), European Commission associated states and Canada.
Job opportunities
In Charge of Documentary Ressources: genes and diseases
Please send your CV and cover letter with the reference 2020-US14-002 to:
- Annie OLRY
- E-mail : jobs.orphanet@inserm.fr
- Tel : +33 (0)1 56 53 81 37
European Interoperability Data Steward
EJP-RD
Please send your CV and cover letter to:
- E-mail : celine.angin@aphp.fr
VASCERN Project Manager
ERN
Please send your CV and cover letter to:
- Marine HURARD
- E-mail : marine.hurard@aphp.fr
Project manager
CHU Brest
Please send your CV and cover letter to:
- Véronique KERLAN
- E-mail : veronique.kerlan@chu-brest.fr
- Tel : +33 (0) 2 98 34 71 19
Media
Surviving Hemopholia, a book by Cees Smith
Cees Smit is living with Hemopholia, a rare disease for which blood does not clot normally following lack of sufficient blood-clotting proteins. In his book, entitled “Surviving Hemopholia”, he is explaining his life odyssey through healthcare system, as well as his patient advocacy during 45 years. Cees Smit is warning patients, caregivers, and the general public of side effects and disastrous consequences of the disease, and on the long way for patients to reach access the treatment for Hemopholia.