TURNER SYNDROME SUPPORT SOCIETY UK SEMINAR DAY

Turner Syndrome Support Society UK

Turner Syndrome Support Society UK

“ Turner Syndrome Seminar Day ” 8th of March 2025

“Sharing information for better understanding of heart & fertility risks in TS”

at Golden Jubilee Conference Hotel, Beardmore Street. Clydebank, Glasgow, G81 4SA

A Turner Syndrome Seminar Day on Heart & Fertility Risks in TS is open to adults with TS, their partners and families. Teens with TS may attend if they are fully informed of all implications of a TS diagnosis. Please note we are not able to provide any childcare facilities.

The Turner Syndrome Support Society [UK] is proud to be hosting this event with support from Novo Nordisk. This is a day that was planned for the 10th Turner Syndrome International Conference [TSI2020] but it had to be cancelled because of the pandemic. Our Clinical Advisory Board helped plan the “Meet the Expert Education Day” and some of those expert speakers have agreed to talk to families at our seminar day. We are pleased to confirm we have some wonderful speakers attending.

The theme for this TS Seminar Day is

“ Sharing for better understanding of heart & fertility risks in TS”

All too often, we hear about girls and ladies with TS having to make choices regarding heart health care, treatment, and surgery. This can often have implications for their fertility options, requiring the girls, ladies, and their families having to make complex decisions affecting their future health. Both healthcare professionals and families want the best for their patients. We thought bringing families and experts together to discuss the latest research findings and clinic experiences from different countries would be beneficial.

A full-day information programme

An opportunity to hear from heart, fertility, and endocrine experts with TS knowledge to share and we will hear personal stories from individuals who have TS. Places are limited so booking early is advised. Booking closes by the 3rd of February 2025.

The cost is £50 per person, includes refreshments, lunch and seminar. Booking is available via this link if the cost is prohibitive e-mail Arlene she may be able to help.

If you have any questions please e-mail Arlene Smyth

[email protected]

Supported by Novo Nordisk, and the TSSS UK

Turner Syndrome Support Society UK

“ Turner Syndrome Seminar Day ” 8th of March 2025

“Sharing information for better understanding of heart & fertility risks in TS”

atGolden Jubilee Conference Hotel, Beardmore Street. Clydebank, Glasgow, G81 4SA

Preliminary Programme

10:00: - Coffee & Registration

10:10: - Introductions & information: Arlene Smyth – Executive Officer

10:20: - Welcome: Prof. Gerry Conway & Prof Melanie Davies Patrons of the TSSS UK

10:20 -11:00: -International Guidelines and Research updates

Morning Panel members: Prof. Gerry Conway (UK), Ms. Melanie Davies (UK), Dr Claus Gravholt (Denmark), Dr Alene Turner (UK) Ass. Prof. Anne Shakkeaek (Denmark) Dr Liz Orchard (UK) Sr. Emma Weingart (UK) Glasgow Jubilee Cardiac Surgery Team Caroline Marquis personal story.

Adult Experts share their knowledge on the transition to adult care, BP & cardiac management,

11:00 – 12:00: - Adult Session 1 – Adult cardiac care

12:00 – 13:00: -Adult Session 2 – Pregnancy and fertility preservation

An update on access to fertility preservation and opinions on pregnancy care

13:00 -14:00: -Lunch

Afternoon Panel members: Dr Tony Hulse (UK), Prof. Jo Blair (UK), Dr Caroline Brain (UK) Dr Alene Shantsila (UK), TSSS members personal story of IVF with donor egg and others TBC

14:00 – 15:00: - Paediatric Session 1 – Diagnosis of cardiac conditions and treatments.

Paediatric Cardiac & Endocrine Experts will share their knowledge on what to look for in order to diagnose and treat BP and cardiac care in TS early.

15:00 – 16.00: - Paediatric Session 2 – Induction of puberty and preparation for fertility options.

Optimal induction of puberty schedules will be discussed, along with the impact on potential fertility. There will be a discussion on current treatment options and the prognosis for girls with TS now and in the future.

15:30 -16:00: -Tea

16.00 – 16.45: - Questions & Answers

16:45 -17:00: -Summary and closing remarks by Dr Tony Hulse

This is a draft programme and is subject to change

Supported by Novo Nordisk, and the TSSS UK

Host or Publisher Arlene Smyth