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Support Groups

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Many parents find talking with others who share similar challenges and joys to be enormously helpful. Families of children with ongoing health conditions or developmental differences often face unique issues not commonly experienced by all parents and caregivers. For these reasons, a variety of supportive gatherings take place at Seattle Children’s. Some groups are sponsored by Children's – groups organized and facilitated by hospital staff or staff/family/community partnerships. Other groups are hosted at Children's – groups organized and facilitated by volunteer family leaders or community organizations.

Alliance for DSD Family and Peer Support

Hosted at Seattle Children's 

This group provides information, contact and support to parents, children and young adults affected by disorders of sex development (DSD), including conditions sometimes previously referred to as “intersex.” Hosted at Seattle Children’s Hospital, this group meets on the first Sunday of each month from 3 to 5 p.m. Parents wanting to take part in a vibrant and supportive online community regardless of their child’s specific diagnosis or whether their child is being raised as a boy or raised as a girl can visit the AIS/DSD Support Group for Women and Families.

Call Jane Goto, community liaison, at 206-271-1513, or email her to register or for more information.

Arthrogryposis Family Networking

Sponsored by Seattle Children's 

Every quarter, Children’s Medical Rehabilitation staff hosts a midday luncheon for families who have children with arthrogryposis. These luncheons coincide with the quarterly Arthrogryposis Clinic dates. They are a time to meet other families, share a meal together and learn from staff and one another. For more information, contact the Rehabilitation Medicine nurse line at 206-987-2114, option 4.

Autism, Living Life and You (ALLY)

Sponsored by Seattle Children's 

ALLY is a support group for parents of children age 7 and older who have severe autism. The group meets the first Thursday of the month from 6 to 7:30 p.m. Please email Lynn Vigo for an intake application or call 206-987-3571. This support group is open to the general public.

Children's Hydrocephalus Support Group

Hosted at Seattle Children's 

We are a parent-led group hosted by Children’s Neurosurgery Department that provides support, education and current research and advocacy information about living with hydrocephalus. We hold four meetings per year (child care is provided most of the time) and a family fundraising walk/picnic in the summer. We also offer online and phone support if needed. We welcome all parents, caregivers, children and adults affected by hydrocephalus, regardless of where a person is treated. Please visit our website for more information. You may also email support group manager Lori Poliski to be added to the distribution list or call 425-482-0479 and leave a message.

Eating Disorders Northwest (EDNW)

Hosted at Seattle Children's 

Eating Disorders Northwest sponsors a support group for people 17 years and older struggling with eating disorders and food and weight concerns. At each meeting, we have a facilitated discussion and an open sharing time. The group meets every Sunday from 7 to 8:30 p.m. For a current calendar, visit EatingDisordersNW.org or call 206-517-3643.

The Epilepsy Parent Support Group

Hosted at Seattle Children's 

This parent-led group offers opportunities for sharing and learning with one another in addition to periodic educational guest speaker presentations on topics related to epilepsy. Meetings are bimonthly with childcare provided. We also host a summer family picnic. The group is open to any family affected by epilepsy, regardless of where a child is treated. Whether you have a child who is newly diagnosed or has been living with epilepsy for years, we hope you will find us to be a helpful resource.

For more information, including upcoming meeting dates, locations and activities, please visit Epilepsysupportnw.org or contact Lynn Snow at 425-831-1640 or by email.

First Steps

Sponsored by Seattle Children's

First Steps is a support group for parents of children age 6 and under who have been diagnosed with autism in the last year and who are patients at Seattle Children’s Autism Center. The group meets the first Thursday of the month from 6 to 7:30 p.m. Monthly meetings alternate between parent support and parent education. Please contact your Seattle Children’s Autism Center provider for more information.

Grief Support: Journey Program

Sponsored by Seattle Children’s

Seattle Children’s Journey Program is for any family who has experienced the death of a child. The Journey Program provides support to help families cope with death, loss and the grieving process. Our support groups for adults are facilitated by trained and caring staff. Please see the Journey Program page for more information.

Grief Support: Parent Support (PS)

Hosted at Seattle Children’s

This parent-led group provides support for anyone who has experienced the loss of a child through stillbirth, miscarriage or newborn death. PS groups are led by trained parent volunteers from the community who themselves have experienced the loss of a baby. PS groups are offered throughout the Puget Sound area, including one held at Seattle Children’s Hospital on the first Thursday of every month at 7:30 p.m. PS also has a "Pregnancy After Loss" group that meets on the last Wednesday of every month at 7 p.m. Visit the Parent Support website for current meeting locations, dates and times.

Heart-to-Heart Congenital Heart Defects Support Group

Hosted at Seattle Children's 

This parent-led support group welcomes families dealing with congenital heart defects (CHD), heart conditions from illness, heart transplant; who have learned their unborn baby may have a heart problem or who are grieving the loss of a child to a heart condition. This group is also a place for our kids and their siblings to meet others who have gone through similar times. We meet once a month at Seattle Children’s Hospital. Child care is offered during the meetings. If you would like to join us or you want to know more, please call Dr. Josephine Young, parent, at 425-460-5669 or by email.

Little Kids with Insulin Dependent Diabetes (L'Kidds)

Sponsored by Seattle Children's 

Little Kids with Insulin Dependent Diabetes (L'Kidds) is a support group for parents of infants, toddlers and preschoolers with Type 1 diabetes. We meet Saturday mornings from 10 a.m. to noon at Seattle Children’s Hospital every other month. Child care is provided during our meetings. We also host a fun family picnic each July. To learn more or to RSVP for a group and let us know how many children will be attending, contact Carrie Engstrom, parent, at 206-774-9482 or by email.

Parents of Children with Cancer Networking Group and Kids' Creative Arts Group

Sponsored by Seattle Children’s in partnership with Gilda’s Club Seattle

These drop-in groups are open to parents and their children ages 5–11. Families will meet for light food and beverages followed by a parents' gathering and a separate children’s time for creative arts. The groups will take place on the first and third Thursdays of the month from 6 to 7:30 p.m. in the Family Lounge on the 7th level of the Forest zone. The groups are free and facilitated by licensed mental health counselors Megan Holmes and Colleen Barrows. For more information or to sign up to attend please contact Sally Benson at 206-709-1400 or, toll free, 866-200-2383.

Parent Support Program (PSP)

Sponsored by Seattle Children's 

The Parent Support Program offers families of children with special health needs a way to connect with an experienced volunteer parent who has been through a similar situation with their own child. Parent "matches" are made with the intention of providing emotional, practical and informational support. Conversations between parents typically take place over the phone. For more information, contact Lawrie Williams, PSP coordinator and parent, at 206-987-1119, or visit the Center for Children with Special Needs site.

Pediatric Brain and Spinal Cord Tumor Support Group

Hosted at Seattle Children's 

Whether your child has just been diagnosed or has been off treatment for years, this group is a place to talk with other parents about issues specific to brain and spinal cord tumors and the after-effects of their treatment. We are a fairly informal group. Our meetings are an open forum for parents to talk and offer support to one another. Occasionally, we have guest speakers talk about issues important to our community. We generally meet at the hospital on the third Thursday of each month from 6:30 to 8 p.m. Child care is available. For more information and to confirm meeting dates, contact Jennifer Trudeau at 206-335-9562.

Pediatric Brain Injury Support Group

Sponsored by Seattle Children’s in partnership with HeadStrong and the Brain Injury Association of Washington 

This group meets quarterly providing an opportunity for parents and caregivers to connect and share information, stories, successes and challenges faced when caring for a child or youth living with brain injury. There are also fun, organized activities provided for the children and youth themselves ranging in ages from 5 to 21. Siblings are also welcome to attend, and free childcare for children under 5 years old is provided. For more information, to find out when the next meeting is taking place or to register please contact Rachel Harmon at 206-987-4265 or by email, as space is limited.

Sibshops

Sponsored by Seattle Children's 

Sibshops provide peer support and education for brothers and sisters of children with special health or developmental needs. These are lively events that include fun activities, games, special guests, discussion and information sharing. Sibshops sessions for different age groups are typically offered every other month throughout the school year on Saturdays. For more information or to register, visit Sibshops, call 206-987-4133 or send an email.

Solidarity in Sarcoma Parent Group

Hosted at Seattle Children's 

Families are invited to join other parents and caregivers for an evening of sharing common experiences, making connections and providing support to one another. The group meets monthly at the hospital. Childcare is not provided. For more information or questions contact Karen Gordon, LICSW, by email or at 206-987-1507.

Transgender and Gender Nonconforming Children Support Group

Hosted at Seattle Children's 

Does your child prefer to wear the clothes of the "opposite" gender or insist that he is really a girl or that she is really a boy? Do you struggle with how best to support your child (of any age) while helping them stay safe? Is your child transgender or is this just a phase? You are not alone. Come join our support and information groups, and share your experiences with other parents and family members. For more information to join these groups, contact Aidan Key at 855-4-GENDER (855-443-6337) or by email.

  • Parent Group I – For families with children from ages 4 to 12. Meets on the first Sunday of every month from 4 to 6 p.m. Childcare provided.
  • Parent Group II – For parents of transgender teens. Meets on the third Sunday of every month from 4:30 to 6:30 p.m.
  • Gender Odyssey Teen Group – For transgender, gender nonconforming and questioning teens. Meets on the third Sunday of every month from 4:30 to 6:30 p.m.

Velocardiofacial Syndrome (VCFS)/Digeorge Syndrome Support Network

Hosted at Seattle Children's 

Our group provides parents with information about VCFS and contact with other parents. Through these connections, parents may find they share similar life experiences and challenges with their children due to this syndrome. From time to time, we host informal get-togethers. For more information, contact Elaine McMinn, parent, at 206-300-7512.

Writing As a Righting Journey: Workshop for Parents Whose Children Live with a Chronic Illness

Hosted at Seattle Children's 

In this reflective writing workshop parents will be guided through writing exercises as a way to explore and share thoughts, feelings and experiences about their unique journey. You do not have to be a writer to join; just have a desire to use writing as a way to explore the way illness affects our lives. We will meet once a month for 6 months at Seattle Children’s. Read a more detailed description of this workshop. For more information or to register contact Suzanne Edison, MA, parent of a child with juvenile myositis and poet, at 206-325-5176, ext. 1.

This workshop is free and open to parents whose children live with ongoing health conditions or special needs.

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