The New England Hemophilia Association (NEHA) will host a virtual Newly Diagnosed Families Retreat on Saturday, May 15 from 9 AM to 11:30 AM.
This event was created to bring families together in a relaxed setting to ease the anxiety surrounding a bleeding disorder diagnosis and offer peer support from other families in similar situations. The retreat is intended for families with kids ages 10 and under who have been diagnosed with a bleeding disorder.
The Retreat will feature three sessions. The first two are intended for parents and our final activity is for the whole family!
- 9:00 AM: Welcome
- 9:15 AM: Parenting During the Pandemic
- Parents will hear from a psychologist and pediatric neuropsychologist, Juliana S. Bloom, PhD, who will talk about parenting a child with a bleeding disorder. This will focus on managing behavior around treatment, talking about your child’s diagnosis with others, and coping during the pandemic.
- 10:00 AM: Breakout Rooms with Experienced Parents
- Parents will be placed into small groups to share their stories, receive peer support from other families, and build new connections.
- 10:45 AM: Panel & Scavenger Hunt
- The whole family will come together for our final activity: a bleeding disorders scavenger hunt and panel discussion. This session will feature a local HTC nurse, a school counselor, the parent of a child with a bleeding disorder, and an affected teen.
All registered families living in New England will also receive one $50 Gift Card per household to cover the cost of breakfast that morning, in addition to a box with program supplies and materials!
This event is open to 2021 NEHA Members only. New families are welcome to become a member at any time. To learn more about becoming a member, or to request a free membership scholarship, please click here. If you are unsure if you are a 2021 NEHA member, please email [email protected].