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Other Resources for Families and Women with Galactosemia and POI

 

- What is POI?
- For Parents of Daughters with Galactosemia and POI
- For Women with Galactosemia and POI
- Other Resources
- Glossary

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College studentResources for families affected by galactosemia

Parents of Galactosemic Children (PGC), Inc.
PGC is a non-profit organization dedicated to connecting families affected by galactosemia with each other and with health care professionals. They host a biannual conference that often includes seminars or speakers on POI.

Parents of Galactosemic Children, Inc.
P.O. Box 2401
Mandeville, LA 70470-2401
galactosemia.org

Galactosemic Discussions
This is a vibrant online discussion forum for people with galactosemia and their families. A woman with galactosemia and her husband created this discussion forum. It covers many topics related to galactosemia and there are several threads that talk about POI.

galactosemics.org

New England Consortium of Metabolic Programs
Based at Boston Children’s Hospital, one of the goals of the Consortium is to develop social support programs and educational materials for patients with metabolic disorders and their families. The “For Families” section of the web site contains many educational materials and links to other resources.

New England Consortium of Metabolic Programs
1 Autumn Street, Room 526
Boston, MA  02115
617-355-7346
newenglandconsortium.org

Resources for women with POI

International POF Association
Three friendsIPOFA is a nonprofit organization dedicated to providing community, support and information to women with POI (they call it POF) and their loved ones; to increase public awareness and understanding of POI, and to work with health care professionals to better understand this condition. This organization’s Web site includes an active discussion forum.

IPOFA
PO Box 23643
Alexandria, VA 22304
Support Line: (703) 913-4787
pofsupport.org

RESOLVE: The National Infertility Association
RESOLVE.org is a community for women and men with infertility and provides information, support, and opportunities to take action.

RESOLVE: The National Infertility Association
1760 Old Meadow Rd., Suite 500
McLean, VA 22102
Phone: 703.556.7172
resolve.org

RESOLVE of the Bay State Chapter
This is a branch of RESOLVE that specifically serves the entire New England area.

RESOLVE of the Bay State
395 Totten Pond Road, Suite 403
Waltham, MA 02451
Phone: 781-890-2225
resolveofthebaystate.org

Premature Ovarian Failure: A Guide for Teens
This is an information sheet created by the Center for Young Woman’s Health at Boston Children’s Hospital. It provides information especially for teenage girls who are dealing with POI.

youngwomenshealth.org/pof.html

Do I have Premature Ovarian Failure?
This booklet for women and their families explains POI, its possible causes, its symptoms, and its treatments and explains some NICHD research on the condition.

https://www.nichd.nih.gov/publications/pubs/pof/index.cfm

Adoption Resources

The Child Welfare Information Gateway
Family with bicyclesThe Child Welfare Information Gateway is a great resource on all aspects of adoption. It is supported by the Administration for Children and Families (ACF), part of the federal government’s Department of Health and Human Services. Child Welfare Information Gateway services include technical assistance, a library collection, publications, databases on adoption resources, and information on federal and state legislation related to adoption.

Child Welfare Information Gateway
Children’s Bureau/ACYF
1250 Maryland Avenue, SW, Eighth Floor
Washington, DC 20024
Phone: 1-800-394-3366 or 703-385-7565
Fax: 703-385-3206
E-mail: info@childwelfare.gov
childwelfare.gov

Alternative Reproductive Therapy Resources

The American Society of Reproductive Medicine
The American Society of Reproductive Medicine (ASRM) is an organization devoted to advancing knowledge and expertise in reproductive medicine and biology. ASRM produces many facts sheets and booklets for people facing fertility problems.

American Society of Reproductive Medicine
1209 Montgomery Highway
Birmingham, AL 35216-2809
Phone: (205) 978-5000
Fax: (205) 978-5005
E-mail: asrm@asrm.org
asrm.org

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PDF Click here for a complete, printable PDF of this guide.
Click here to order a full-color, paper booklet of this guide.