Kids Club - Registration

Join us for the Kids Club, a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions to increase opportunities for social interaction and connection with others who have a similar diagnosis.

The Kids Club will include fun, age-appropriate games and activities for your child (such as Bingo, Would You Rather, Scavenger Hunt, 5 Second Rule, etc) and will be held on Zoom.

This is a recurring group that meets monthly on the third Thursday of every month. (Register once and attend any dates)

Parent/Guardian Information

First Name

Last Name

Zoom information will be sent to this email AND program participant's email, if applicable

Cell Phone Number

Program Participant's Information

First Name

Last Name

If no email, leave blank. The zoom details will also be sent to the parent/guardian email listed above.

Birthdate

Please provide a birthdate to confirm the program participant meets the age requirements for this program.

Affected by:

To register another participant, select "add another response" ↓

Program Permissions/Consent

Due to the nature of this program and the ages of the participants involved, additional consent waivers are needed to participant in this program. Zoom information will not be sent until a staff member has reviewed & confirmed participant eligibility and parent/guardian consent.

Download the consent form HERE.

Upload signed consent form:

Program Permissions/Consent

Group Description

The Marfan Foundation is hosting a virtual group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome and related genetic aortic and vascular conditions, to increase opportunities for social interaction with others who have a similar diagnosis. The Kids Club will include fun, age-appropriate games and activities, such as Bingo, Would You Rather, Scavenger Hunt, and 5 Second Rule, and will be led by our social worker, Andrea Friedman, MSW. This group is not designed to offer therapy, counseling or advice, but rather an opportunity to have fun and be more connected with others in the same age group.

Each group will run for approximately 60 minutes and will be held from 7:00-8:00 pm ET on the third Thursday of each month, beginning in February 2021 (Feb. 18th). The group will be held on Zoom. It is expected that children join on camera and participate for the duration of the group. Pre-registration and parental/guardian consent for the group is required.

Acknowledgements and Agreements

I hereby consent to have my child participate in an online social group, Kids Club, provided by The Marfan Foundation. I acknowledge and understand the following:

1. That the purpose of this group is to offer social connections for individuals ages 9-12 who have a diagnosis of Marfan syndrome, VEDS, Loeys-Dietz syndrome or a related genetic aortic or vascular condition.

2. That this group is being provided via Zoom video conferencing. Although we have group guidelines in place to create a safe and supportive virtual environment, due to the nature of this technology, we cannot guarantee privacy of participants. It is important that your child be in a private area when participating and where your child will not be interrupted.

3. That the following ground rules are important to create a safe and supportive environment for everyone in the group: A) Show respect to others, B) Allow others time to participate, and C) Freedom to choose whether to participate.

4. That family members or friends who are not group members may not participate.

5. That participants may be removed from the group if they do not follow the guidelines and ground rules listed above.

Consent to Participation

By signing below and by having my child participate in the virtual social group, I acknowledge and agree to the terms and conditions set herein.

Parent/Guardian Electronic Signature

Date