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Support Groups

Support Groups

The Children's Hospital of Philadelphia hosts a wide range of family support groups. These groups welcome new families and are available to provide comfort and solace to parents and others who are coping with a child's chronic medical condition, illness or injury.

Through these groups, parents and caregivers meet others facing similar issues. They can exchange helpful, practical information and learn new skills to help in caring for their child. They can also learn to manage the stress family members may be experiencing as a result of their child's diagnosis or medical condition.

Children's Hospital hosts the following support groups on the hospital campus. Please note, however, that these groups are parent-led and are not directly affiliated with the hospital:

CAID/SAID Support Group

This support group is for all with a CAID/SAID (Childhood Auto-inflammatory Diseases/Systemic Auto-inflammatory Diseases) and is not limited to CHOP patients. Speakers will discuss state-of-the-art treatments, new innovations and support strategies for patients. Food and drinks will be provided as well as some activities for the children. Meeting is scheduled for Wednesday, April 22 from 6:30 - 8:30 p.m. in the Hope Auditorium on CHOP's main campus. Email stopCAIDnow@aol.com with any questions.

Cancer Center ‘Stronger Together’ AYA Support Groups

The Cancer Center holds virtual support groups for teens and young adults (high-school aged and older) where patients have a chance to connect with others going through similar experiences and find support. Two groups are currently running: on-treatment and off-treatment groups, both facilitated by a staff psychologist. For more information, please text message to 856-500-2270.

Duchenne Muscular Dystrophy Parents' Group

This support group for parents meets twice a year. Call Alan Tuttle, MSW, LCSW, at 215-590-6875.

Family Support Group

This group offers support for caregivers of children with HIV-AIDS who are served by Children's Hospital. Call Special Immunology at 215-590-2956.

SibShop

Sibshops is held six Saturdays a year from, for siblings in 1st-8th grades. Sibshops is a fun and rewarding program for brothers and sisters of children with special health or developmental needs to gain peer support and education through facilitator led discussions, activities and games. If you are interested in learning more about sibshops, please email brothersandsisters@email.chop.edu.

Hemophilia Parent Group

This group is for parents whose children receive treatment for hemophilia through Children's Hospital. Call Lisa Maiale-Howell, MSS, LCSW, at 215-590-3514.

House of CHOP

This support group is for HIV-infected adolescents over 14 years of age. Call Christine Ambrose, MSW, LSW, at 215-590-4943.

Kinship Caregiver Group

This group provides support for grandparents and family caregivers of children infected-affected by HIV-AIDS. Call Special Immunology at 215-590-2956.

Maple Syrup Urine Disease (MSUD) Parent Group

This is a parent-led support group for parents of children with MSUD. Call Dawn Marie Hahn, parent coordinator, at 717-445-5961.

Marfan Syndrome Support Group

An educational and social support group for families that meets four times a year. Call Nina Maslin, parent coordinator, at 610-446-4936.

Multiple Sclerosis Support Group

This group is for children with multiple sclerosis and their families. It meets four times a year. Call Claire M. Chee, RN, at 215-590-1719.

Neurorehab Parent Support Group

This group is open to parents and caregivers of children with traumatic or acquired brain injury and is co-facilitated by a social worker and a parent. The group meets 7-8:30 p.m. the second Wednesday of every month on the third floor of Seashore House. Call Maureen Sullivan, MSW, 215-590-7645, for more information or if you would like to be added to the group's electronic mailing list.

Oncology Parent Support Group

This group is for parents whose children are inpatients on the Oncology units at Children's Hospital. Call Lamia Barakat at 267-426-8135.

REACH-OUT: Support Group for Teens with Chronic Illness

This group meets weekly and is open to teens and young adults with chronic health needs. The group provides educational and social opportunities for teens to connect with each other and learn better ways to manage their needs as they grow into independent adults. Call 215-590-2121 or the main social work department at 215-590-2072.

Seizure Disorder Group

For parents of children age 4 and under with seizure disorders. Call Claire M. Chee, RN, at 215-590-1719.

Sickle Cell Parents Club

The Sickle Cell Parents Coalition for Advocacy, Support and Education (CASE). This group meets monthly in different locations within the Hospital. Call Charles Adams, MSW, at 215-590-4164.

Spina Bifida Support Group

Discussion and activities for caregivers, patients and siblings. For more information, call Jeanne Melchionni, RN, or Amanda Hinkle, social worker, at 215-590-2957.

Teens with Epilepsy

For teens age 12 to 20. A parents' group meets at the same time. Call Claire M. Chee, RN, at 215-590-1719.

VATER-PACE Support Group

This group is available to families with children who have esophageal atresia, imperforate anus, and/or other anomalies in the VATER Association. Meetings offer open discussion for parents on a variety of topics. Activities for children and their siblings are offered in an adjoining room. Call the social work department at 215-590-2072.

Williams Syndrome Support Group

This education and support group for families includes meetings and yearly conferences. Call Ann Haegele, parent coordinator, at 215-639-9172.

Women's Group

This group is for HIV-positive women whose children are served at Children's Hospital. Call Special Immunology at 215-590-2958.

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