Registration, programme, and more information here.

Registration and more information here.

The meeting will include talks on cutting edge research from some of the world’s leading investigators in this field. It will also include discussions on developing the new and existing networks required to further progress research in this field and translate recent advances into clinical applicability – the development of multi-centre patient registries, national and international databases and future collaborative projects and grant applications.

There are two options for attending this meeting (there is no charge for tickets for either option, although in-person attendees must cover their own travel and accommodation costs):

• In person in Amsterdam – please note, there are limited tickets available, so book early. If you register and later decide not to attend, please inform us.
• Online – please note, online attendance is available for Thursday 16th March only.

For additional information, please contact the meeting organisers:
Connie Bezzina (c.r.bezzina@amsterdamumc.nl), Nynke Hofman (n.hofman@amsterdamumc.nl), Roddy Walsh (r.t.walsh@amsterdamumc.nl).

Abstract submission
Abstracts are invited for this symposium, especially from early career researchers. A number of submitted abstracts will be selected for talks during Session 6. There will also be poster viewing for all submitted abstracts. Please send abstracts to genetics_abstracts@amsterdamumc.nl (abstract deadline: 17/02/2023).

To improve the existing treatments of those living with rare diseases, academic trials are conducted that focus on drug repurposing. Academic-led clinical trials face a number of challenges; some linked to the multinational nature of the rare disease research and others are more specific to the academia setting including lack of funding, inadequate infrastructures as well as processes to facilitate collaboration. 

The workshop will look to identify obstacles hindering the development of academic-sponsored trials for drug repurposing on rare-diseases. The participants will work together to raise awareness of the difficulties encountered by the different stakeholder groups, promote future collaboration, suggest improvements for services and tools to support the community and impart existing supporting activities. By advancing academic clinical trials in drug repurposing, the workshop hopes to improve the treatment options for those living with rare diseases.

The article written as a result of the NSS meeting, which served as groundwork for the upcoming event, can be found here.

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the seventh round of funding.

The in-person event will take place over three days on June 20th – 22nd in Groningen, Netherlands. The meeting will be hosted by the centre of expertise for PMS of the UMC Groningen, Netherlands, member of ERN-ITHACA.

The outcomes of the meeting will be:

• a strong collaboration between different European research groups and centres of expertise for Phelan-McDermid syndrome
• insight in the needs of the patient representatives and strengthen their participation in research- a priority list of knowledge gaps that need to be studied
• consensus on the variables to be collected in the European PMS database 

More information here: https://ern-ithaca.eu/events/upcoming-events/european-meeting-on-phelan-mcdermid-syndrome/

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the second round of funding in September 2020.

The in-person event will take place over two days on June 17th – 18th in Bruges, Belgium.

A BARD-meeting was originally scheduled in July 2020 to be held in the Belgian city of Bruges. Over 100 abstract submissions had been received for the original conference. Unfortunately, the pandemic upset all these plans and the Congress had to be postponed. In this networking conference, selected papers from the abstracts will be presented during the sessions together with invited lectures from the faculty. Others will be able to be presented as electronic on-site and online posters and will be discussed during the meeting and afterwards on the interactive BARD-website.

More information and registration here: http://www.bard-online.com/

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the first round of funding in March 2020.

The in-person event will take place on June 17th in Munich, Germany from 09.00 – 18.00 CET.

In this networking conference, participants will gain valuable insights into innovative perspectives in both basic and clinical research. The scientific programme draws together experts from around the world to discuss breakthroughs in basic research, advances in clinical practice, novel therapeutic approaches and new insights into stem-cell and cellular therapies. It is thus an ideal forum to share knowledge, connect with professional colleagues and grow your professional networks.

More information and registration here: https://www.was2022.org/

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the 1st round of funding in March 2020.

The meeting will again be held in Brussels, Belgium, at the Vrije Universiteit Brussel (VUB) on Saturday 14th and Sunday 15th May.

AKU researchers, academics, and students are invited to submit ideas for presentations and talks to be discussed during the meeting, and we welcome suggestions on those you think may be beneficial to invite to the workshop.

More information are incoming, including an agenda and the potential of paid travel and accommodation, very soon. To express interest, please email ciaran@akusociety.org.

More information here: https://akusociety.org/aku-scientific-conference-may-2022-brussels/ 

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity as part of the third round of funding in December 2020.

The hybrid event will take place over two days from April 29th – 30th in Florence, Italy with an online attendance option.

In this networking conference, in addition to discussing the progress of the treatment guideline on management of AIE developed by a special Task Force, 50 experts from 14 European countries will also discuss the state of the art of AIE, including history, the use of brain imaging, blood and brain fluid biomarkers. Importantly, the networking conference has the additional goal to create further European collaboration: TREAT AIE. The aims of this collaboration are standardization of data, sharing of databases, creating an European framework database, leading to fruitful research collaborations.

Registration for the event is free but mandatory.

More information and registration here: https://www.morecomunicazione.it/archivio-eventi/treat-aie-networking-conference/

This event has received funding support from the EJP RD’s Networking Support Scheme (NSS) funding opportunity.

The in-person event will take place over three days from April 27th – 29th.

Special interest will be devoted to clinical diagnosis and patient management, genetics and onset molecular mechanisms, advanced models and methods to address VSCM diagnosis and therapy, therapeutic approaches and potential candidates for drug treatments, research-support framework.

Registration is open until April 7th.

More information and registration here: https://poic-e-dintorni.org/efvm-2022/