Marfan Patient day in Amsterdam – May 6th 2018
Please join us for the first The Marfan Foundation International Patient Symposium on Marfan Syndrome and Related Disorders to be held in Amsterdam featuring speakers from several countries including the US. This event offers both education and support programs that were created to increase your understanding of Marfan and related disorders, answer your questions about diagnosis and treatment, and improve the quality of your life. Topics pertaining to adults, teens, and children with Marfan and related disorders will be covered. The program also includes a Creating Connections Luncheon where you can spend time networking with people in your area who also have Marfan or a related disorder.
After the main program there will be time for a meet and greet with the doctors and fellow patients from across Europe.
Time | Activity |
8:00 – 8:30 AM | Registration |
8:30 – 8:45 AM | Welcome and Opening Remarks |
8:45 – 9:15 AM | Connective Tissues – Background and Overview |
9:15 – 9:45 AM | Heart issues for Children and Teens |
9:45 – 10:15 AM | Safety Guidelines for Physical Activities |
10:15 -10:30 AM | Coffee Break |
10:30 – 11:00 AM | Physical Therapy for Pain and Mobility |
11:00 –11:30 AM | Heart Issues for Adults |
11:30-12:00 noon | The Marfan Foundation International Patient Registry |
12:00 – 1:00 PM | Creating Connections Lunch |
Afternoon Workshops – select one each hour | |
1:15– 2:00 PM | Genetic Testing and Family Planning |
1:15 – 2:00 PM | Medications for Pain Relief |
1:15 – 2:00PM | Reframing to Improve the Quality of Your Life |
2:15 – 3:00 PM | Growing Older with Marfan |
2:15 – 3:00 PM | Pregnancy and Marfan |
2:15 – 3:00 PM | Understanding Your Eye Issues |
3:00 – 3:30 PM | Group Q&A |
3:30 – 3:45 PM | Closing Remarks |
3:45 – 5:00 PM | Meet and Greet |