Share your concerns with other parents of children with neonatal Marfan syndrome. Please note: Participation is limited to parents of those with neonatal Marfan syndrome.
Just when you or a family member feel like you have adjusted to having a connective tissue condition and are effectively dealing with the medical issues, you face other complications. Join this session to learn more about coping with a chronic condition and how to prioritize medical issues on a daily, weekly, and monthly basis.
Participate in this session to talk about challenges and coping strategies with other unaffected partners/spouses. Please note: Participation is open to any connective tissue condition, but is limited to unaffected partners/spouses.
Experiencing Loss (Professional and Personal Perspectives) (webinar then coffee shop chat) This session will focus on the impact of loss in your family or in the community. Join this session to understand the process of grief and how to help yourself get through it.