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.
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.
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 firstname.lastname@example.org.
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.
Parent Bereavement Group, Evenstar
This group of parents whose children have died meets for a series of sessions twice a year. Open to Children's Hospital families only. Call the Bereavement Coordinator at 215-590-3273.
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.
Sibling Bereavement Group
This group brings together brothers and sisters of children who have died. It meets for a series of sessions twice a year. Open to Children's Hospital families only. Call the Bereavement Coordinator at 215-590-3273.
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.
This group is for HIV-positive women whose children are served at Children's Hospital. Call Special Immunology at 215-590-2958.