1st International Meeting on MRKH Syndrome July 3rd-6th, 2014, Warsaw, Poland Final Program & Abstracts

Transcription

1 1st International Meeting on MRKH Syndrome July 3rd-6th, 2014, Warsaw, Poland Final Program & Abstracts

2 1st International Meeting on MRKH Syndrome July 3rd-6th 2014 Warsaw, Poland

3 Executive team Karina M. Sasin (Warsaw, PL) - Chairman, Organizing Committee Karina Kapczuk, MD, PhD (Poznan, PL) - Chairman, Scientific Committee Geraldine Daneau (Antwerp, B) - member, Organizing Committee Lise Gimre (Kristiansand, NO) - member, Organizing Committee Pinja Pulkamo (Aspoo, FI) - member, Organizing Committee Thank you The Organizing Committee team would like to kindly thank all the Patrons for their great support. We would like to extend our sincere gratitude to the Invited Guest Speakers for their generous contribution to the Meeting. We would like to express huge appreciation for the constant support and assistance we have received from our wonderful volunteers. Our gratitude goes to all the Participants for coming and making this Meeting warm and very special event.

4 Dear Friends and Colleagues, On behalf of the Organizing Committee it is our pleasure to welcome you to the 1st International Meeting on MRKH Syndrome. We are delighted to warmly welcome all delegates to this event. This meeting brings together patients from all around the world as well as clinicians, scientists and representatives from various NGOs and patients from all around the world who are interested in MRKH syndrome. Together with the Norwegian MRKH Association, the French MRKH Association and our Partners we are planning an inspirational program in true Polish hospitality. Whatever your background is and wherever you work in hospital, research, education, NGO or social work we are keen to ensure that your interests are responded to in the development of our Summer School. The theme is Making Dreams Come True. Our focus is on the intersection of the many challenges faced by the women with MRKH syndrome. By theming our Meeting in this way, we want to promote new conversations that transcend our specific fields and points of view. Warsaw, Poland, is one of the Europe s most livable cities the undisputed events, sport and food capital in the country. It is a modern, multicultural metropolis of over two million people, famed for blending business and pleasure. We hope you will take up the many opportunities for you to enjoy Warsaw and its surrounds and all that is has to offer. On behalf of the Organizing Committee, Karina M. Sasin Karina Kapczuk, MD, PhD

5 Meeting Objectives The 1st International Meeting on MRKH Syndrome aims to bring together leading academic scientists, researchers, clinicians, various NGO representatives and patients to exchange and share their experiences and research results about a wide range of aspects of MRKH syndrome, serving as an invaluable educational tool and update on topical issues of increasing clinical relevance, and encompassing the multidisciplinary approach to diagnosis, treatment and support of patients with mullerian agenesis. It also provides the premier interdisciplinary forum for researchers, practitioners and educators to present and discuss the most recent innovations, trends, and concerns, practical challenges encountered and the solutions adopted in the field of MRKH syndrome research. Topics covered: Uterus transplantation Innovations in surgical treatment Genetics of MRKH syndrome Psychosexual aspects Emerging issues MRKH syndrome as a Rare Disorder Pre-conference Workshops: 1. Communication skills for health professionals working with MRKH patients 2. Introduction to MRKH syndrome 3. Point of view depends on viewing point. Living with MRKH through the patientprofessional's eyes

6 General information Language: The official language of the Congress is English. Admission badges: Due to the security reasons the Meeting badge should be worn by all participants at all times during the Meeting, pre-congress workshops, in the exhibit area and within all other areas of the Children s Memorial Health Institute and Patron Hotel, as well as during all social activities. Only participants wearing their badge will be admitted to the scientific sessions, to the exhibition and to the social events. Please note that if you lose or misplace your badge, you will be required to pay a 50 PLN fee to have a new badge issued. Registration desk: The registration desk will be open at the following hours: Thursday, June, 3 rd 10 am to 7.30 pm Friday, June 4 th am to 7 pm Saturday, June 5 th - 8 am to 3 pm Registration desk can be found in the Reception Area Certificate of Attendance: Certificates of attendance will be available for all participants and will be ready to pick up from the registration desk on Saturday, June 5th. Dress code: Dress code for the Summer School (incl. Welcome drinks reception) is business casual and casual for all social events. We strongly recommend comfortable shoes for Saturday afternoon trip.

7 Venue Conference Venue The Children s Memorial Health Institute is the largest and most modern specialist pediatric hospital in Poland. It is also a research institute contributing to modern pediatrics. Our mission is to implement the achievements of modern science as quickly as possible so as to prevent disease and diagnose and treat children even more effectively than today. We conduct research in cooperation with leading centers in Europe and around the world, organize symposia and conferences, and conduct specialist courses for doctors and nurses from all over Poland. Hotel Patron The Hotel started its activities as a separate project in December 1978 in Warsaw- Miedzylesie, in the area of Instytut Pomnik Centrum Zdrowia Dziecka. Since 2002 it has been functioning with a new Board of Directors and under a new name PATRON, it has been constantly modernised and it is available for a wide range of national and foreign guests. Its location far from the city noise, next to the Mazovian Landscape Park, offers ideal conditions for work, education, and rest. Conference room and cafeteria E Floor 1 Main entrance

8 How to get to the Children s Memorial Health Institute? From Warsaw Chopin Airport: Take bus no. 188 (destination: Goclawek Wschodni). Leave bus on Pl. Na Rozdrozu stop and from the same bus stop take bus no. 525 to Centrum Zdrowia Dziecka stop. From Warsaw Modlin Airport: Take Modlin Bus ( to Centrum bus stop. Use underground walkway to get to the bus stop on Marszalkowska St. and take bus no. 525 to Centrum Zdrowia Dziecka stop. From Central Train Station (Dworzec Centralny): Take bus no. 525 from the bay between the station and Zlote Tarasy shopping mall. From Mlociny Coach Station: Take underground (destination: Kabaty) to Centrum station and take bus no. 525 from Marszalkowska St. to Centrum Zdrowia Dziecka. From Wilanowska Coach Station: Take underground (destination: Mlociny) to Centrum station and take bus no. 525 from the bus stop on Marszalkowska St. to Centrum Zdrowia Dziecka. Public transport fares: Single fare tickets [Bearer] (valid for all day lines and night lines) Types of tickets and fares Single fare transfer ticket entitles to an unlimited number of journeys for a period not exceeding 75 minutes (1. zone) or 90 minutes (1. and 2. zone) from its validation or entitling to a single journey to a stop or station which is the last on the route. Short-term [Bearer] Travelcards (valid for all day lines and night lines) 20-minute City Travelcard entitles to unlimited number of journeys within 20 minutes from validation Short-term [Bearer] Travelcards (valid for all day lines and night lines) 1-day ticket entitles to unlimited number of journeys for 24 hours from its validation Weekend ticket entitles to unlimited number of journeys from 7:00 PM on Friday till 8:00 AM on Monday Group weekend ticket entitles a group of up to 5 people to unlimited number of journeys from 7:00 PM on Friday till 8:00 AM on Monday zone standard price (fare) 50% 1 4,40 PLN 2,20 PLN 1 2 7,00 PLN 3,50 PLN 1 2 3,40 PLN 1,70 PLN ,00 PLN 26,00 PLN 24,00 PLN ,00 PLN 7,50 PLN 13,00 PLN 12,00 PLN

9 Overview Program Time THURSDAY July 3 rd Room 10:00-19:00 Registration open RECEPTION AREA 13:00-14:00 LUNCH CAFETERIA 14:00 16:00 W1 Communication skills for health ROOM A professionals working with MRKH patients 14:00-16:00 Support group (PL) ROOM B 14:00-17:00 WS Makeup Workshop RECEPTION AREA 16:00-16:30 COFFEE BREAK RECEPTION AREA 16:30-18:30 W2 - Point of view depends on viewing point. Living with MRKH through the ROOM A patient-professional's eyes 17:00-18:30 W3 Introduction to MRKH syndrome ROOM B 19:00-20:00 Opening Ceremony ROOM A 20:00 24:00 Welcome drinks reception MARRAKESH Time FRIDAY July 4 th ROOM 07:30-09:00 Registration RECEPTION AREA 09:00-11:15 Session 1. Making dreams come true ROOM A through the research 11:15-11:30 COFFEE BREAK RECEPTION AREA 11:30-13:00 Session 2. It s not just about anatomy - ROOM A psychosexual aspects of MRKH 13:00-14:00 LUNCH BREAK CAFETERIA 14:00-16:00 Session 3. Building multilateral ROOM A partnership in research and treatment 16:00-16:30 COFFEE BREAK RECEPTION AREA 16:30-18:00 Session 4. Q&A session ROOM A 20:00-24:00 BBQ party MARRAKESH Time SATURDAY July 5 th Room 10:00-12:00 Session 5. "Not alone with the diagnosis - ROOM A patient organizations and groups 12:00-12:15 Closing remarks ROOM A 12:30-15:30 Round-table discussion Where are we and where will we go? 16:30 Trip to Copernicus Science Center, Water & Light Fountains, Dinner at Marrakesh Cafe ROOM A SUNDAY, July 6 th 09:00-14:00 Cooking workshop with Malka Kafka

10 Summer School Scientific Program in Details July 3rd 14:00 16:00 Workshop 1- Room A Communication skills for health professionals working with MRKH patients Katarzyna Walczyk-Matyja, PhD, Poznan, PL 14:00-16:00 Support Group Room B Support group in Polish (PL) led by Marta Szymanska-Pytlioska and Aleksandra Chodecka 14:00-17:00 Make up Workshop -Reception Area Make Up Workshop in 2 sessions led by Anna Pieczur and Justyna Napiorkowska 16:30 18:30 Workshop 2- Room A Point of view depends on viewing point. Living with MRKH through the patient-professional's eyes Karina M. Sasin, Warsaw, PL 17:00-18:30 Workshop 3 - Room B Introduction to MRKH Syndrome Karina Kapczuk, MD, PhD, Poznan, PL 19:00-20:00 Opening Ceremony - Room A Opening ceremony Hosted by: Organizing Committee 20:00-23:00 Reception Area Welcome drinks reception

11 Summer School Scientific Program in Details July 4th 09:00-11:15 Session 1 Room A Making dreams come true through the research chaired by: Witold Kędzia, MD, PhD 1. Uterus Transplantation The Sahlgrenska Academy experience Liza Johannesson, MD, PhD, Goteborg, SE 2. EU support of rare disorders patients Dariusz Rokicki, MD, Warsaw, PL 3. What does it take to create a female reproductive tract? Amy C. Lossie, PhD, Bethesda, MD, USA 4. Genetic basis of MRKH syndrome Daniel Guerrier, PhD, Rennes, FR 5. Familial occurrence of MRKH syndrome and the application of whole exome sequencing in investigations of the genetic etiology Morten Herlin, Aalborg, DK 11:30-13:00 Session 2 Room A It s not just about anatomy - psychosexual aspects of MRKH chaired by: Karina Kapczuk, MD, PhD 1. Psychosexual functioning of women with MRKH Syndrome Aleksandra Chodecka, PhD, Marta Szymaoska-Pytlioska, PhD, Poznan, PL 2. The effect of a group programme on women with the Mayer-Rokitansky-Küster- Hauser syndrome Philomeen Weijenborg, MD, PhD, Leiden, NL 3. Cognitive-behavioral therapy in MRKH syndrome - literature review Aleksandra Rataj, MA, Dagna Skrzypinska, MA, Cracow, PL 14:00-16:00 Session 3 Room A Building multilateral partnership in research and treatment chaired by: Liza Johannesson, MD, PhD 1. The Holistic approach: from (epi)genetic analysis to multidisciplinary treatment surrounded by an awareness program for professionals and lay people Verene Henninger, MD, PhD, Tubingen, DE 2. Treatment of MRKH syndrome Rennes experience Karine Morcel, MD, PhD, Rennes, FR 3. MRKH syndrome management Poznan experience, Karina Kapczuk, MD, PhD, Poznan, PL 4. Reality vs. expectations management of vaginal agenesis in Poland Karina M. Sasin, Warsaw, PL 16:30 18:00 Session 4 Room A Chaired by: Invited Guest Speakers and Presenting Authors,

12 Summer School Scientific Program in Details July 5th 10:00-12:00 Session 5 Room A Not alone with the diagnosis - patient Organizations and groups chaired by: Organizing Committee 1. Poland Think globally, work locally - Stimulating research through empowering patients - Karina M. Sasin 2. Norway Support and Awareness of MRKH in Norway - Lise Gimre 3. Finland - Pinja Pulkamo 4. France - "Association Syndrome de Rokitansky-MRKH Géraldine Daneau 5. News from other countries Géraldine Daneau 12:00-12:15 Room A Closing remarks 12:30-15:30 Room A Round-table discussion Where are we and where will we go? (lunch will be served, by invitationonly)

13 Workshop Description W1. Communication skills for health professionals working with MRKH patients Faculty: Katarzyna Walczyk-Matyja, PhD, Poznao, PL Intendent participants: students, interns, residents, fellows, attendings, advanced nurse practitioners, psychologists This workshop will bring an unique opportunity for healthcare providers to gain experience on dealing with MRKH patients. Lead by experienced clinical psychologist will explain basic and advanced concepts of patient-doctor relationship in case of MRKH patients. This workshop aims to improve participants interpersonal skills through talks, demonstrations and case studies. W2. Point of view depends on viewing point. Living with MRKH through the patient-professional's eyes Faculty: Karina M. Sasin, Warsaw, PL Intendent participants: residents, fellows, attending s, advanced nurse practitioners, psychologists 1st International Meeting on MRKH Syndrome brings an unrepeatable opportunity for health-care professionals to get a unique insight on different aspects of diagnosis, treatment and daily living of women with vaginal agenesis. This workshop s prime focus is to understand the implications of numerous difficulties faced by women with MRKH in virtually all aspects of daily live, from talking with parents and peers, to sexual relations, dealing with children and spiritual/religious life and translate these findings into meaningful support system. This will be done through talks, demonstrations and case-based clinical and real-life scenarios. This workshop will help participants understand emotional aspects of absolute infertility during different stages of life. It will also improve skills and confidence in providing evidence-based advice on diagnosis, treatment and family-building options. The current emphasis on building good patient-doctor relationship makes it imperative to provide high quality clinical care, conduct research, and publish the results in peer reviewed journals. W3. Introduction to MRKH Syndrome Faculty: Karina Kapczuk, MD, PhD, Poznao, PL Intendent participants: patients During this interactive workshop patients will learn about virtually all aspects of MRKH syndrome, from embriological origin, to diagnosis, treatment, family-building options, and experimental treatments. They will be presented from non-traditional perspective. There will be time for sharing experience and informal questions and answers session.

14 Social events All evening social events will take place in Marrakesh Deli. The food at the Marrakesh Deli is prepared by Moroccan native cooks, and the food is fully vegan. They aim to use only fresh and unprocessed ingredients. Their food does not contain any artificial colourings or taste enhancers. Transportation from the hotel will be provided. Welcome Drinks Reception Thursday, 3 July 2014 from 7 p.m. to 10 p.m. All participants are warmly invited to join us for the Opening Ceremony which will be an entertaining and eventful introduction to the meeting. After the Opening Ceremony, we will invite our delegates to the Welcome Reception with refreshments and beverages to be served. Summer BBQ Party Friday, 4 July 2014 from 8 p.m. After the day fulfilled with lectures and discussions all participants are kindly invited for a night full of fun and delicious food with live cooking station! Mediterranean Dinner, 5 July 2014 As a great informal closing event all participants are welcome for an evening filled with the best, tasty, healthy, 100% vegan food and a cool entertainment program. Lunch at Tel-Aviv For participants who enjoy the trip to downtown Warsaw we plan a lunch at the sister restaurant to Marrakesh Tel-Aviv Cafe. Self-service with modern Israeli food and the best cider in town is a perfect kick off for exploration of Warsaw city center!