Information is available on the website and through social media. An annual family conference is held every summer in varying locations.
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The Kids Club is a virtual social group for children ages 9-12 with Marfan syndrome, VEDS, Loeys-Dietz syndrome, and related genetic aortic and vascular conditions. Kids Club provides opportunities for social interaction and connection with others who have a similar diagnosis.
22 Manhasset Avenue
Port Washington , 11050, NY
Accessible Location: Yes
Type of Organization | Nonprofit (501c3) |
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Categories | Advocacy, Conferences, Disability Specific, Emotional Support, Social Media, Other |
Services offered in Spanish? | yes |
Newsletter? | yes |
Child Care Available? | No |
Age Range | All Ages , Birth - 3 , 3-5 , 6-11 , 12-14 , 15-21 , 22 and up |
Disability Categories | Genetic or Congenital Disorder |
Does this organization belong to all disabilities? | No |
This organization belongs to these diagnoses | Marfan Syndrome |
Is this a statewide service? | yes |
Website | http://www.marfan.org/ |
Contact Name | |
Email Address | |
Phone Number | 516-883-8712 |