- Your DNA, Your Say collaborators - public-lists.sanger.ac.uk

by Елена Баранова

Hej! Dear Charlotta, I am Elena Baranova, medical genetisist from Russia, Moscow. The head of my reseach and I have been involved in YDYS project. My family and I live in Sweden now. Vi bor i Färila, Gävleborg iän. Min man jobbar på hälsocentral i Färila. Han är underläkare nu. Jag går på SFI. I am at the ESHG conference today. I will be very happy if you have time for small conversation with me. I really need your advise. Greatfully, Elena Baranova

1 year, 1 month

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Message from Charlotta Ingvoldstad Malmgren re:ESHG Conference 2024 in Berlin

by Lauren Robarts

Hello, Please see the below message from Charlotta of the Sweden YDYS team. FYI anyone subscribed to this group can send an email at any time to “YDYS(a)wgc.org.uk<mailto:YDYS@wgc.org.uk>” and it will reach everyone on this list. Warm regards, Lauren Robarts Dear all of you from the global YDYS team, I hope you all are fine. It has been a while since we all met virtually. Obviously a pandemic came in the way for us meeting in person. Me and my colleague Maria in Sweden, has sent an abstract to this year’s ESHG on the Swedish Rare diseases patient representative’s YDYS data. Gabriela has also sent an abstract on the Brazilian and Costa Rican data. Hopefully we will both be accepted. If anyone else of you will be at the ESHG conference it would be really nice to meet and catch up over a coffee or so. So, if you are to be at the ESHG in Berlin 1-4 June this year. Please sent me a mail and I will arrange a time and place for us to meet at the venue. Looking forward to meet some of you then. Take care Charlotta Vänliga hälsningar Charlotta Ingvoldstad MalmgrenPhD, Genetisk vägledare Centrum för sällsynta diagnoser, Klinisk genetik och Centrum för fostermedicin, Karolinska universitetssjukhuset Sammankallande Svenskt nätverk för information kring fosterdiagnostik, Snif Sammankallande Etik och policygruppen, EoP, inom SFMG Lauren Robarts Production Manager - Creative Team Engagement and Society [image001.jpg] Wellcome Connecting Science | Wellcome Genome Campus | Hinxton | CB10 1RQ | UK Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> wellcomeconnectingscience.org/engage<https://www.wellcomeconnectingscience.org/engage> Follow Engagement and Society on LinkedIn<https://www.linkedin.com/company/engagewcs/> Follow Science Engagement and Enrichment on Twitter<https://twitter.com/engageWCS> | YouTube<https://www.youtube.com/channel/UCUzZKO3uzq8PQBeJhLLDxQg> | yourgenome.org<https://www.yourgenome.org/> Follow Research and Dialogue on YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w/videos>

1 year, 5 months

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Catch up on our webinar: Perspectives of the Irish public on the use of their genetic data for research

by Emma Garlick

[cid:image001.jpg@01D8B8A7.9A0F1AC0] Dear colleagues, Thank you to those of you who attended our Engagement and Society Seminar, on perspectives of the Irish public on the use of their genetic data for research from our Your DNA Your Say Series. If you missed it, you can watch the full recording here<https://societyandethicsresearch.wellcomeconnectingscience.org/catalogue/pe…>. In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research, discussed the results of a survey of 1000 participants in Ireland about their views on the use of their genetic data in research. She highlighted concerns they have about potential harms, who can access their genetic data for research, and their preferences on the governance of their genetic data. Vicky McGrath, CEO of Rare Diseases Ireland, responded to these findings and discussed what they mean for patients with rare diseases in Ireland. We look forward to inviting you to our next seminar. Best wishes, The Engagement and Society team, Connecting Science *** [wcs_emailsig]<https://www.wellcomeconnectingscience.org/> Wellcome Connecting Science | Wellcome Genome Campus | Hinxton | CB10 1RQ | UK Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

2 years, 11 months

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YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research

by Emma Garlick

26th July 2022 Seminar time: 11:00am BST Zoom Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 <https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09%C…> Password: ESseminar YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research Who do the Irish public trust to use their genetic data for research, and what controls do they want on its use? Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research and Vicky McGrath, CEO of Rare Diseases Ireland discuss findings from the Irish arm of the Your DNA, Your Say study We are honoured to be hosting our 7th and final installment of the Your DNA Your Say Seminar Series with the Irish team. Genomic medicine and research are at an important intersection in Ireland. A National Genetic and Genomic Strategy is under development, and this should guide the implementation of genetic and genomic medicine and research in Ireland. To ensure support for any such policy, it is essential that the views of patients in Ireland inform its development. In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research, will discuss the results of a survey of 1000 participants in Ireland about their views on the use of their genetic data in research. In particular, she will highlight concerns they have about potential harms, who can access their genetic data for research, and their preferences on the governance of their genetic data. Vicky McGrath, CEO of Rare Diseases Ireland, will respond to these findings and what they mean for patients with rare diseases in Ireland. There are an estimated 300,000 people in Ireland living with rare conditions. With over 6,000 identified rare diseases, of which 72% are genetic in origin, genetics and genomics are key to both care and innovation for this underserved community. People living with rare conditions in Ireland are spending years seeking a diagnosis. A recent survey by Rare Diseases Ireland revealed that 37% or respondents were waiting over 5 years for a diagnosis with 53% of respondents being investigated and treated for 3 or more rare conditions and 73% seeing 3 or more consultants with different specialisms on their diagnostic journey. The burdens of this diagnostic odyssey on the individual, their family and the healthcare system as a whole are enormous. Genetics & genomics is a tool that can help to reduce this burden by shortening the diagnostic odyssey and providing a definitive answer. 77% of respondents who had access to genetic services received a diagnosis through this pathway. Genetic diagnosis provides those living with rare conditions the opportunity to get involved in research and to access new and novel therapies. It provides families with opportunities to manage risk, plan future pregnancies and network with families with a similar diagnosis.

3 years

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YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research

by Emma Garlick

26th July 2022 Seminar time: 11:00am BST Zoom Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 <https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09%C…> YDYS Ireland Webinar: Perspectives of the Irish public on the use of their genetic data for research Who do the Irish public trust to use their genetic data for research, and what controls do they want on its use? Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research and Vicky McGrath, CEO of Rare Diseases Ireland discuss findings from the Irish arm of the Your DNA, Your Say study We are honoured to be hosting our 7th and final installment of the Your DNA Your Say Seminar Series with the Irish team. Genomic medicine and research are at an important intersection in Ireland. A National Genetic and Genomic Strategy is under development, and this should guide the implementation of genetic and genomic medicine and research in Ireland. To ensure support for any such policy, it is essential that the views of patients in Ireland inform its development. In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research, will discuss the results of a survey of 1000 participants in Ireland about their views on the use of their genetic data in research. In particular, she will highlight concerns they have about potential harms, who can access their genetic data for research, and their preferences on the governance of their genetic data. Vicky McGrath, CEO of Rare Diseases Ireland, will respond to these findings and what they mean for patients with rare diseases in Ireland. There are an estimated 300,000 people in Ireland living with rare conditions. With over 6,000 identified rare diseases, of which 72% are genetic in origin, genetics and genomics are key to both care and innovation for this underserved community. People living with rare conditions in Ireland are spending years seeking a diagnosis. A recent survey by Rare Diseases Ireland revealed that 37% or respondents were waiting over 5 years for a diagnosis with 53% of respondents being investigated and treated for 3 or more rare conditions and 73% seeing 3 or more consultants with different specialisms on their diagnostic journey. The burdens of this diagnostic odyssey on the individual, their family and the healthcare system as a whole are enormous. Genetics & genomics is a tool that can help to reduce this burden by shortening the diagnostic odyssey and providing a definitive answer. 77% of respondents who had access to genetic services received a diagnosis through this pathway. Genetic diagnosis provides those living with rare conditions the opportunity to get involved in research and to access new and novel therapies. It provides families with opportunities to manage risk, plan future pregnancies and network with families with a similar diagnosis.

3 years

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YDYS Ireland Seminar (ES Seminar Series)

by Emma Garlick

Hello All, I hope you are well! We are holding the final webinar in the YDYS series this year which will be delivered by Dr. Ciara Staunton and Vicky McGrath on Tuesday July 26th at 11am UK time. Please see below for more details: Tuesday 26th July 2022 11:00-12:00 BST Dr. Ciara Staunton and Vicky McGrath Perspectives of the Irish public on the use of their genetic data for research Webinar link: https://sanger.zoom.us/j/98067995147?pwd=OTg3UjA1NEFESlVMa1dTcnRyWWxxUT09 Who do the Irish public trust to use their genetic data for research, and what controls do they want on its use? Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research and Vicky McGrath, CEO of Rare Diseases Ireland discuss findings from the Irish arm of the Your DNA, Your Say study Genomic medicine and research are at an important intersection in Ireland. A National Genetic and Genomic Strategy is under development, and this should guide the implementation of genetic and genomic medicine and research in Ireland. To ensure support for any such policy, it is essential that the views of patients in Ireland inform its development. In this seminar, Dr Ciara Staunton, Senior Researcher at the Institute for Biomedicine, Eurac Research, will discuss the results of a survey of 1000 participants in Ireland about their views on the use of their genetic data in research. In particular, she will highlight concerns they have about potential harms, who can access their genetic data for research, and their preferences on the governance of their genetic data. Vicky McGrath, CEO of Rare Diseases Ireland, will respond to these findings and what they mean for patients with rare diseases in Ireland. There are an estimated 300,000 people in Ireland living with rare conditions. With over 6,000 identified rare diseases, of which 72% are genetic in origin, genetics and genomics are key to both care and innovation for this underserved community. Information on the webinar can be found here: https://bit.ly/ESseminarYDYSIreland If you could share this with anyone you feel would be interested in attending, or on social media channels, that would be fantastic. Please find attached the banner we have created for twitter. Have a lovely weekend and hopefully see you virtually on Tuesday 26th! Best Wishes Emma Emma Garlick Team Administrator (Research & Dialogue / Creative Team) Working days: Tuesday, Wednesday and Friday typically Engagement & Society [/var/folders/41/m6gk958n6zb8n8nsdq3dpv0m000llh/T/com.microsoft.Outlook/WebArchiveCopyPasteTempFiles/cidDDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> Follow Research and Dialogue on Twitter<https://twitter.com/ethicsWCS> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w/videos>

3 years

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Headed on maternity leave - contact Emma Garlick for ongoing support

by Lauren Robarts

Hello, I hope you’re all well! I wanted to write to let you know that I will be on maternity leave from the start of July so Emma Garlick (emma.garlick(a)wellcomeconnectingscinece.org<mailto:emma.garlick@wellcomeconnectingscinece.org>) will be taking over supporting Your DNA, Your Say, including organising the seminar series from here on out. It’s been lovely working with you all and I hope a lot of great papers and talks come out of your data! Warm regards, Lauren Robarts Production Manager - Creative Team Engagement and Society | Tel: +44 (0)1223 495332 [cid:C3B85714-DE61-4DE6-9DCF-D4C2C15392A5@Home] Wellcome Connecting Science | Wellcome Genome Campus | Hinxton | CB10 1RQ | UK Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> wellcomeconnectingscience.org/engage<https://www.wellcomeconnectingscience.org/engage> Follow Engagement and Enrichment on Twitter<https://twitter.com/engageWCS> | Facebook<https://www.facebook.com/engageWCS> | Instagram<https://www.instagram.com/engagewcs/> | YouTube<https://www.youtube.com/channel/UCUzZKO3uzq8PQBeJhLLDxQg> | LinkedIn<https://www.linkedin.com/company/engagewcs/> | yourgenome.org<https://www.yourgenome.org/> Follow Research and Dialogue on Twitter<https://twitter.com/ethicsWCS> | YouTube<https://www.youtube.com/channel/UCASglZ45HDb5b7r8aNJP56w/videos>

3 years, 1 month

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Video & Slides now available - The Role of Awareness in DNA Data Sharing and Public Opinion in India

by Lauren Robarts

Hello, Many thanks to those who joined our webinar on Wednesday 30 March, The Role of Awareness in DNA Data Sharing and Public Opinion in India - Challenges Observed, presented by Dr Qurratulain Annie Hasan and Swayamsiddha Sahoo. The video and slides of that talk are now available online, here: bit.ly/ESseminarYDYSIndia<http://bit.ly/ESseminarYDYSIndia> If anyone is interested in presenting at the May or June addition, please let us know. Get in touch with Emma Garlick at emma.garlick(a)wellcomeconnectingscience.org<mailto:emma.garlick@wellcomeconnectingscience.org> Have a lovely weekend! Warm regards, Lauren Robarts Senior Manager - Creatives Engagement & Society Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [cid:DDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow ethicsWCS on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

3 years, 4 months

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Re: The next YDYS Seminar - 30th March 10am BST

by Emma Garlick

Hello All, Just a quick prompt to let you know the next seminar starts in 40 minutes – 10am UK time. The zoom link and details can be found here: https://bit.ly/ESseminarYDYSIndia Hope to (virtually) see you there! Best Wishes Emma Emma Garlick Administrator (Research & Dialogue / Creatives) Working days: Tuesday, Wednesday and Friday typically Engagement & Society Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [/var/folders/41/m6gk958n6zb8n8nsdq3dpv0m000llh/T/com.microsoft.Outlook/WebArchiveCopyPasteTempFiles/cidDDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow ethicsWCS on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society. From: Emma Garlick <emma.garlick(a)wellcomeconnectingscience.org> Date: Friday, 25 March 2022 at 07:41 To: "ydys(a)wgc.org.uk" <ydys(a)wgc.org.uk> Subject: YDYS - The next YDYS Seminar - 30th March 10am BST Hello All, I hope you are well! We are holding the next YDYS webinar which will be delivered by Qurratulain Annie Hasan on Wednesday March 30th at 10am UK time. Please see below for more details: Wednesday 30th March 2022 10:00-11:00 BST Dr. Qurratulain Annie Hasan The role of awareness in DNA data sharing and public opinion in India — challenges observed The foundation of the study ‘Your DNA, Your Say’ rests on the willingness of individuals around the world to share data about themselves which is then made available to clinicians and researchers and society at large for health care. Trust is an important factor in sharing DNA information. However, during analysis of Indian data, it was evident that people’s awareness about DNA has to be assessed before we can establish their willingness to donate. In this seminar Dr. Qurratulain (Annie) Hasan, Sr. Consultant & HOD, Research Director at the Department of Genetics and Molecular Medicine, Kamineni Hospitals, Hyderabad, India along with Swayamsiddha Sahoo, Research Trainee under Dr. Hasan, who has completed her MA in Public Policy and Governance from Tata Institute of Social Sciences, Hyderabad, India; will discuss their methodology and findings. They will also elaborate on how variables like gender, age and level of education are factors that are decisive regarding awareness to DNA and how their awareness plays an important role in building trust to donate their DNA data. They will also try address the staggering questions pertaining to Big Data, DNA and Public Policy. Information on the webinar, including the Zoom link, can be found here: https://bit.ly/ESseminarYDYSIndia If you could share this with anyone you feel would be interested in attending, or on social media channels, that would be fantastic. Please find attached the banner we have created for twitter. Have a lovely weekend and hopefully see you virtually on Wednesday! Best Wishes Emma Emma Garlick Administrator (Research & Dialogue / Creative Team) Working days: Tuesday, Wednesday and Friday typically Engagement & Society Wellcome Connecting Science| Wellcome Genome Campus | Hinxton | Cambridgeshire | CB10 1SA | UK wellcomeconnectingscience.org/societyandethics <http://www.wellcomeconnectingscience.org/societyandethics> [/var/folders/41/m6gk958n6zb8n8nsdq3dpv0m000llh/T/com.microsoft.Outlook/WebArchiveCopyPasteTempFiles/cidDDAFE692-2E61-449D-B8AF-09CF54DBBEDC@Home] Follow ethicsWCS on Twitter<https://twitter.com/WGCethics> | blog<https://genomethicsblog.org/> Wellcome Connecting Science enables everyone to explore genomic science and its impact on research, health and society.

3 years, 4 months

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Updated invitation: Webinar: The Role of Awareness in DNA Data Sharing and Pu... @ Wed Mar 30, 2022 10am - 11am (BST) (ydys@wgc.org.uk) [EXT]

by lf8＠sanger.ac.uk

This event has been changed. Title: Webinar: The Role of Awareness in DNA Data Sharing and Public Opinion in India — Challenges Observed Join from a PC, Mac, iPad, iPhone or Android device: Please click this URL to join. https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_s_97904… Passcode: E&Sseminar Description: The foundation of the study ‘Your DNA, Your Say’ rests on the willingness of individuals around the world to share data about themselves which is then made available to clinicians and researchers and society at large for health care. Trust is an important factor in sharing DNA information. However, during analysis of Indian data, it was evident that people’s awareness about DNA has to be assessed before we can establish their willingness to donate. In this seminar Dr. Qurratulain (Annie) Hasan, Sr. Consultant & HOD, Research Director at the Department of Genetics and Molecular Medicine, Kamineni Hospitals, Hyderabad, India along with Swayamsiddha Sahoo, Research Trainee under Dr. Hasan, who has completed her MA in Public Policy and Governance from Tata Institute of Social Sciences, Hyderabad, India; will discuss their methodology and findings. They will also elaborate on how variables like gender, age and level of education are factors that are decisive regarding awareness to DNA and how their awareness plays an important role in building trust to donate their DNA data. They will also try address the staggering questions pertaining to Big Data, DNA and Public Policy. Or One tap mobile: +13017158592,,97904602319#,,,,*7591691784# US (Washington DC) +13126266799,,97904602319#,,,,*7591691784# US (Chicago) Or join by phone: Dial(for higher quality, dial a number based on your current location): US: +1 301 715 8592 or +1 312 626 6799 or +1 346 248 7799 or +1 646 558 8656 or +1 669 900 9128 or +1 253 215 8782 Webinar ID: 979 0460 2319 Passcode: 7591691784 International numbers available: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_u_abz8P… Or an H.323/SIP room system: H.323: 162.255.37.11 (US West) 162.255.36.11 (US East) 213.19.144.110 (Amsterdam Netherlands) 213.244.140.110 (Germany) Webinar ID: 979 0460 2319 Passcode: 7591691784 SIP: 97904602319(a)zoomcrc.com Passcode: 7591691784 When: Wed Mar 30, 2022 10am – 11am United Kingdom Time Where: https://urldefense.proofpoint.com/v2/url?u=https-3A__sanger.zoom.us_s_97904… For anyone on campus, the webinar is now planned in a hybrid format - please join Richard and others from the E&S team in person in Conference Centre Loft Room 2 (changed) Calendar: ydys(a)wgc.org.uk Who: * lf8(a)sanger.ac.uk - organizer * engagesociety(a)wellcomeconnectingscience.org * ydys(a)wgc.org.uk * baranova.gen(a)gmail.com * drjamuar(a)gmail.com * vyasjaya(a)gmail.com * poojarayasam(a)gmail.com * dhanlaxmis22(a)gmail.com * prochimadon(a)gmail.com * sultanafaradz(a)gmail.com * greenpastures(a)gmail.com * nrd121993(a)gmail.com * juliana.mh.lee(a)gmail.com * shalaka.patil1989(a)gmail.com * ankitar219(a)gmail.com * y.bhattacharya12(a)gmail.com * deepabhat(a)jssuni.edu.in * dongremayuresh0896(a)gmail.com Event details: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… Invitation from Google Calendar: https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… You are receiving this courtesy email at the account ydys(a)wgc.org.uk because you are an attendee of this event. To stop receiving future updates for this event, decline this event. Alternatively you can sign up for a Google account at https://urldefense.proofpoint.com/v2/url?u=https-3A__calendar.google.com_ca… and control your notification settings for your entire calendar. Forwarding this invitation could allow any recipient to send a response to the organizer and be added to the guest list, or invite others regardless of their own invitation status, or to modify your RSVP. Learn more at https://urldefense.proofpoint.com/v2/url?u=https-3A__support.google.com_cal…

3 years, 4 months

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Your DNA, Your Say collaborators