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The Forum: "Innovative therapy in the field of rare diseases and biotechnology" recently took place in Moscow, Russia, at the Skolkovo Technopark.
On December 11, 2020, the daylong, online event focused on promising rare disease research as well as new realities and strategies for working in the post-COVID19 era. Participants considered genetic screening for rare diseases as well as the willingness of doctors to apply new medical technologies. Experts discussed the possibilities of free diagnostics of rare diseases, providing them with the necessary lifelong therapy using public and private programs.
View "Collaboration is innovation: Prospects and news in the field of WAGR syndrome research"
Virtual WAGR Weekend 2020 was held on August 1, 2020 live from Philadelphia, Pennsylvania. Forgoing the annual US-based in-person conference due to COVID-19, Virtual WAGR Weekend provided an opportunity for international participation by individuals interested in the IWSA, and in medical care and current research involving WAGR syndrome.
167 Conference registrants from 25 countries attended the event. Virtual WAGR Weekend was also livestreamed on the IWSA public Facebook page, reaching an additional 6,000 people.
The agenda included presentations from representatives of the IWSA and Japan WAGR Syndrome Association, as well as experts including:
Virtual WAGR Weekend was funded in part through a Service for Sight grant by the Delta Gamma Foundation.
View Virtual WAGR Weekend
This eye development and disease conference, with leading researchers in aniridia and other congential eye diseases, took place in 2019 at the University of Virginia in Charlottesville. One conference focus involved potential treatments using gene-based precision medicine. This scientific conference featured an agenda that spanned a variety of disciplines, which gave participants fresh context and new ideas for their own work. Attendees included more than three dozen international scientists, clinicians, and patient organization representatives. Representatives from the IWSA and other Aniridia-related patient advocacy group organizations learned about current research involving Aniridia, and contributed their own distinct perspectives to the discussions.
The IWSA developed and hosted this scientific conference with funding from the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award. The Conference brought together a group of international researchers and parents of individuals with WAGR syndrome to collaborate on the development and prioritization of research projects. The conference was held in Ann Arbor at the University of Michigan.
This conference was a direct follow up to the 2017 Symposium on Wilms tumor in WAGR syndrome. Building on information from the Symposium, the Conference on Wilms tumor in WAGR syndrome followed a unique agenda, which included a focus on input from parents of patients with WAGR syndrome. Both professionals and IWSA parents attending agreed that the format was engaging, encouraging, and educational.
Direct outcomes of this conference included new research projects now being conducted in the US and internationally, and collaborations that include planning of future meetings to build on these successes.
In August 2018, the 4th European Conference on Aniridia was held in Paris, France, and hosted by the French organization, Association Generis. An international group of researchers and clinicians were joined by patients and patient advocacy group representatives for this scientific conference focused on diseases of the iris and associated conditions.
Among the topics addressed were:
The conference also featured an interesting poster session highlighting aniridia-related topics, including research and clinical management.
The IWSA hosted an informal meeting prior to the start of the conference to meet with representatives from European Aniridia groups. This meeting provided the opportunity to present IWSA information and activities and to create collaborative relationships so the IWSA can help European groups support families of and individuals with WAGR syndrome.
The first international Symposium on Wilms tumor in WAGR syndrome was held in 2017 at the University of Michigan in Ann Arbor. The meeting was sponsored by WAGR Warriors, a nonprofit family foundation. This first-of-its-kind event brought together a group of international researchers as as well representatives of the IWSA. Significant gaps in knowledge generated key questions to be addressed as well as suggested topics for future research.
Goals for this symposium focused on
Clinical and research presentations included a wide variety of topics including genetics, pathology, nephron-sparing surgery, radiological imaging, and renal failure and transplation.
The small group of experts and parents of individuals with WAGR syndrome provided a focused opportunity to set future priorities and collaborations.
This scientific conference, held in Duisburg, Germany, and hosted by AWS Aniridie WAGR e.V., also included a "Patient Day". The main objective of the scientific conference was to increase knowledge about aniridia and to establish new contacts between clinicians and researchers across Europe. It also focused on the exchange of information and development of possible joint research projects related to aniridia.
Kelly Trout, IWSA Director of Research and Medical Advocacy, presented at this conference and focused on what was currently known about WAGR syndrome and possible associated conditions.
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