ECRD – the European Conference on Rare Diseases & Orphan Products was the largest multi-stakeholder gathering in Europe for the rare disease community covering research, development of new treatments, healthcare, social care, public health policies and support at European, national, regional and international levels.
14th EUROCAT Symposium: Future perspectives for congenital anomaly research
14-15 June 2018, Ispra, Italy
- Triple Surveillance to improve prevention and care of birth defectsand rare diseases (Lorenzo Botto)
- Maternal age specific prevalence of gastroschisis in the North of Englandover 30 years: a register based study (Judith Rankin)
- Trends in Cleft Lip and/or palate in the Cork & Kerry region of theRepublic of Ireland from 1996-2013 (Helena Ferris)
- Periconceptional parental conditions and embryonic health: new evidence and opportunities of mobile health coaching (Regine Steegers-Theunisse)
- In utero drug exposure and hearing disorders in 2-year-old children: A case-control study using the EFEMERIS database. (Christine Damase-Michel)
- Calling time on pre-natal alcohol exposure: time to ask about alcoholin pregnancy (Mary Teresa O’Mahony)
- Management and Outcomes of Congenital Anomalies in Low-, Middle- and High-Income Countries: A Multi-Centre, International, Prospective Cohort Study.(Naomi Wright)
- How good are we in predicting the risk of infant mortality for newborns undergoing “curative” surgery for structural congenital heart defects?A prospective, population-based cohort (EPICARD) study. (Babak Khoshnood)
- Rare malformation syndromes in Polish Registry of Congenital Malformations in 2014-2017. (Anna Latos-Bielenska)
- POMME cohort: Analysis of drug exposure in children from the first day of theintrauterine life until 6 years old.(Christine Damase-Michel)
- Maternal diabetes and assisted reproductive techniques as maternal risk factors for the VACTERL association using data of EUROCAT registries and the distribution of VACTERL anomalies among VACTERL patients of EUROCAT(Romy van de Putte)
- Maternal smoking and lack of folic acid supplement use during the periconceptional period as risk factors for the VACTERL association using data of the AGORA data-and Biobank and the EUROCAT Northern Netherlands registry.(Romy van de Putte)
- Congenital anomalies: parents’ concerns and opinions towards public health policies and improved effectiveness of health services. (Ana Joao Santos)
Proceedings of the the 14th EUROCAT SCIENTIFIC SYMPOSIUM: will be available in July 2018
27th EURORDIS Round Table of Companies Workshop
16 October, Barcelona. “Patient engagement in the product life-cycle and community advisory boards (CAB)” More information.
EURORDIS Council of National Alliances (CNA) meeting
EURORDIS Council of European Rare Disease Federations (CEF) meeting
EURORDIS Black Pearl Awards
12 February, Brussels More information
EURORDIS Winter School
11 – 14 March, Paris Applications will open here in the coming months.
The intergovernmental negotiations on the global compact for migration will be held at the United Nations Headquarters in New York.Registration now open: multi-stakeholders in consultative status with ECOSOC and those with special accreditation to the GCM process are invited to register to attend all upcoming negotiations:12-15 March 2018 (Trusteeship Council Chamber) 3-6 April 2018 (Conference Room 2) 14-18 May 2018 (Conference Room 2) 4-8 June 2018 (Trusteeship Council Chamber) 9-13 July 2018 (Conference Room 1)Register through the following link: https://reg.unog.ch/event/23763/ For more information on the negotiations, please visit: https://refugeesmigrants.un.org/intergovernmental-negotiations
At its 2018 Resumed Session, the Committee on NGOs will consider new applications for status by NGOs as well as applications deferred from earlier sessions. It will also review quadrennial reports of NGOs in general or special consultative status. The Committee is expected to meet again on 11 June 2018 to adopt its report of the session. This session’s recommendations will be sent to the Economic and Social Council for its approval in July 2018. http://csonet.org/index.php?menu=80
The President of the General Assembly will convene a high level Youth Dialogue on May 30 in the ECOSOC Chamber, UNHQ. The Youth Dialogue aims to listen to the ideas, needs and concerns of young people on bridging education and skills training with employment in the 21st century, as well as on the prevention of radicalization leading to violent extremism, in order to build a conversation between young people, ministers, permanent representatives, civil society representatives and others. The event further seeks to galvanize the efforts of many global alliances and initiatives that are empowering young people. The President of the General Assembly is seeking input from young people through his website and online surveys to shape this event. https://www.un.org/pga/72/event-latest/youth-dialogue/
The General Assembly will hold a one-day high-level meeting on the fight to end tuberculosis on 26 September 2018 with the overall theme “United to end tuberculosis: an urgent global response to a global epidemic”. As part of the preparatory process for the high-level meeting, the President of the General Assembly will convene a civil society hearing in New York on 4 June 2018 with the participation of civil society organizations, academia, medical associations, the private sector, parliamentarians and Member States. The accreditation of civil society organizations without consultative status with ECOSOC was conducted in April for both events. The registration deadline for all participants to the civil society hearing is 22 May 2018. Register here: https://reg.unog.ch/event/24687/For further information and updates, please visit: https://www.un.org/pga/72/event-latest/fight-to-end-tuberculosis/
The President of the General Assembly will convene a high level event on financing for SDGs entitled “Breaking the Bottlenecks of Investment-from Policy to Impact” on June 11 in the ECOSOC Chamber of UNHQ. He aims to bring together Member States, UN entities, other international organizations, private sector and civil society to address the challenges and bottlenecks that block the private investment towards SDG sectors and elaborate the role of the United Nations in strengthening public-private partnerships. It will also provide an opportunity for relevant actors to showcase and share best practices of scaling up financial resources for SDGs. https://www.un.org/pga/72/event-latest/financing-the-sustainable-development-goals/
The Committee on Non-Governmental Organizations (NGOs), is holding consultations with organizations in consultative status with ECOSOC to discuss questions of interest to the Committee or to the organizations relating to the relationship between the NGOs and the United Nations in line with paragraph 61 (a) of ECOSOC resolution 1996/31.The ground-breaking consultations will take the form of written submissions and an interactive hearing which will be held at the United Nations Headquarters in New York on 22 June 2018 from 10:00am – 1:00pm.The hearing will provide an opportunity for NGOs in consultative status with ECOSOC to present and exchange views with members of the Committee on the issues outlined in the attached Concept Note. NGOs in consultative status who can attend the hearing in New York are invited to interact with the Committee during this open session. Organizations who wish to speak at the Hearing will be given three minutes to make their intervention.All NGOs in consultative status with ECOSOC can register to participate in the interactive hearing through the Indico registration system here: https://reg.unog.ch/event/24555/. The deadline for registration is Monday 11 June 2018.The concept note is available here.
The consultations will be webcast on UN Web TV at the following link: webtv.un.org/
The General Assembly will hold its third high-level meeting on the prevention and control of non-communicable diseases on 27 September 2018 in New York 2018 with the overall theme “Scaling up multi-stakeholder and multisectoral responses for the prevention and control of non-communicable diseases in the context of the 2030 Agenda for Sustainable Development”. As part of the preparatory process for the high-level meeting, the President of the General Assembly will convene a civil society hearing in New York on 5 July 2018 with the participation of civil society organizations, philanthropic foundations, academia, medical associations, the private sector, parliamentarians and Member States. The accreditation of civil society organizations without consultative status with ECOSOC is open until 18 May for both events at the following link: https://reg.unog.ch/event/24570/ . Registration of all participants for the civil society hearing will open at the end of May. For further information and updates, please visit: https://www.un.org/pga/72/event-latest/prevention-of-non-communicable-diseases/
NGOs in consultative status with ECOSOC or on the CSD roster are hereby invited to register to participate in the 2018 High-Level Political Forum on Sustainable Development, to take place from 9 to 18 July at the United Nations Headquarters in New York. Please register at: https://reg.unog.ch/event/24577. The deadline for registration is 15 June 2018. In addition to registering, organizations in consultative status with ECOSOC must request grounds passes to attend the HLPF as soon as possible. Organizations that are in consultative status with ECOSOC can request up to 9 temporary grounds passes at a time, in addition to 7 annual grounds passes. These passes need to be requested through the Integrated Civil Society Organizations System (iCSO). CSD Roster organizations can request up to 5 temporary grounds passes. Once the registration is approved, a confirmation email will be sent to participants. Information on how to obtain temporary grounds passes for organizations on the CSD Roster will be sent to approved participants after the registration period is closed. More information is available at https://sustainabledevelopment.un.org/hlpf/2018
The Ninth Working Session of the General Assembly’s Open-ended Working Group (OEWG) on Ageing will be held from 23 to 26 July 2018 in Conference Room 4 at the United Nations Headquarters in New York. For more information about the session, including Proposed Organization of Work, please visit http://bit.ly/OpenEndedWorkingGroup9. NGOs wishing to apply for accreditation may do so online through this link https://social.un.org/ageing-working-group/ngos-ninthsession.shtml#preregistration. The deadline for applying for accreditation is 18 May 2018. Online Registration for NGOs with ECOSOC Status and previously accredited organizations to the OEWG on Ageing will start soon on the same link. Side event online applications are now open and can be accessed at https://www.surveymonkey.com/r/oewga9-events. The deadline for applying to organize a side event is 2 July 2018. Follow us on @UN4Ageing and use #OEWG9 for all your tweets on the 9th working session of the Open-ended Working Group on Ageing.