Living with XXY
A blog by Ryan Bregante about what it means to live with Klinefelter syndrome, also known as 47 XXY, including helpful resources, personal stories, local meetings and much more.
Caring for your child
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Office of Homeless Services
Find information about the services offered by the Office of Homeless Services, and take note of the following hotlines: Domestic Violence Hotline 1-866-723-3014 or 1-866-SAFE-014 Homeless Outreach Hotline: 215-232-1984 Veterans Homelessness Hotline: 1-877-424-3838 Philly Vets Home Coalition Hotline: 215-923-8387
Tuberous Sclerosis Alliance
Learn about TSC, including signs and symptoms. Find information for newly diagnosed patients. Check out volunteer opportunities and the event calendar for ways to get engaged.
NephHope Foundation
NephHope was started by parents of a transplant child whose focus is to find a treatment/cure for those diagnosed with nephronophthisis and Senior-Loken syndrome through research funding. The foundation also works to increase awareness of the disease and provide support to families.
KidsHealth
KidsHealth is a great resource for parents, kids, teens and educators to learn about different illnesses and offer supportive resources. It also provides information on other topics such as body health, good hygiene, puberty, etc.
Kidney School
Provides information for newly diagnosed patients, including kidney disease diagnosis, how kidneys work, coping strategies, as well as diet and exercise and many other topics.
Developmental Therapy Group
The “Developmental Therapy Group” is a group program offered at Virtua Specialty Care Center. Four children participate in an 8-week Physical and Occupational Therapy developmental group aimed at improving skills such as independence with dressing, clothing fasteners, utensil use and handwriting as well as improving general strength, balance and coordination. If your child is age 4 - 8 years old and you'd be interested in participating, please contact devgroupVirtua@chop.edu.
American Academy of Pediatrics Safe and Sound
Responding to the experiences of children adopted or in foster care has downloadable guides for parents, teachers, babysitters and child welfare professionals to help understand how trauma can impact behaviors and development as well as strategies to respond.
Philadelphia Alliance for Child Trauma Services
a network of child serving systems and organizations, under the leadership of the Philadelphia Department of Behavioral Health and Intellectual disAbility (DBHIDS), that provides evidence-based practices for traumatized youth and their families.
A-T Children’s Project: (Ataxia-telangiectasia)
The A-T Children’s Project is a 501c3 nonprofit organization that raises funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding life-improving therapies and a cure for ataxia-telangiectasia (A-T).