PHA offers the following resources for parents:
- Converse with other parents by joining our special email listserv for parents of PH patients: http://www.phassoci ation.org/ listservs/ #parents
- Download, print and use the tips in our Pediatric Guidebook for patients going to school:http://www.phassoci ation.org/ PHAFamily/ SchoolHandbook/ index.asp
- Have your child join a special chat with other PH youths:Youth PH Chat on Tuesdays @ 5:30pm PT (8:30pm ET)
Due to the nature of these chats, additional safeguards are in place -- if you are a youth under 21 with PH and are interested in being part of this chat, please contact PHA atweb@PHAssociation. org. - Talk to leaders of pediatric support groups in the U.S.:
PH Support Group: LA Pediatric
Steve and Marina Van Wormer
Support Group Leader and Parents
818-601-3875
PH Support Group: Massachusetts- Kids w/ PH & their Families
Bill and Laura O'Donnell
Support Group Leader and Parents
Medford, Massachusetts 02155
odonnellw@babson. edu
781-393-8207
PH Support Group: Stanford Pediatric Group
Darci Albrecht, MSW
Support Group Leader
650-725-9626
DAlbrecht@lpch. org
Youth Chats...
Youth PH Chat
Tuesdays @ 5:30pm PST (8:30pm EST)
Due to the nature of these chats, additional safeguards are in place -- if you are a youth under 21 with PH and are interested in being part of this chat, please contact PHA at web@PHAssociation.org.
Tuesdays @ 5:30pm PST (8:30pm EST)
Due to the nature of these chats, additional safeguards are in place -- if you are a youth under 21 with PH and are interested in being part of this chat, please contact PHA at web@PHAssociation.org.
Parents: Help PHA Help You
Are you a parent of a child
with PH and live in the U.S.? PHA is working with a group of parent
volunteers to understand the kind of services and programs that are
most important for YOU, your children and your family. Please help us
better understand the needs and wants of the U.S. PH pediatric
community by participating in a brief research project that will be
conducted online. You would login to a secure site, once a day for
three days, at a time convenient for you, and share your thoughts and
opinions. If you are interested in participating please contact Sarah
Gawlitta at PHA at 301-565-3004 x127.
Helpful Websites..
COTA
Children's Organ Transplant Association. COTA's primary mission is to
ensure that no U.S. citizen is ever denied a life-saving transplant
or access to a transplant waiting list, due solely to the lack of funds.
Our secondary focus is to promote organ donations and to provide public
education on all aspects of the organ donation process. www.cota.org
or 1-800-366-COTA, 2501 COTA Drive, Bloomington, IN 474403.
Starlight Children's Foundation
This international organization offers three outpatient and inpatient programs to seriously ill children: wish granting; "Starlight Rooms" (in-room entertainment), and "Fun Center" (mobile entertainment units). This site contains information on each of these programs as well as contact informatio for Starlight
Make-A-Wish Foundation® of America is committed to making sure that every child with a life-threatening illness has an incredible wish experience that provides hope, strength and joy.
Family Voices
Aimed at families and friends of children with special health care needs. A nonprofit group, their site has useful links (some in Spanish), information on government programs, etc.
Starlight Children's Foundation
This international organization offers three outpatient and inpatient programs to seriously ill children: wish granting; "Starlight Rooms" (in-room entertainment), and "Fun Center" (mobile entertainment units). This site contains information on each of these programs as well as contact informatio for Starlight
Make-A-Wish Foundation® of America is committed to making sure that every child with a life-threatening illness has an incredible wish experience that provides hope, strength and joy.
Family Voices
Aimed at families and friends of children with special health care needs. A nonprofit group, their site has useful links (some in Spanish), information on government programs, etc.