Resources
websites and articles about or related to BPESAbout Face
Equips women and girls with tools to understand and resist harmful media messages that affect their self-esteem and body image. BPES on NORD The National Organization for Rare Disorders has an overview of BPES as well as resources to learn more. Children's Cranialfacial Association Empowering and giving hope to individuals and families affected by facial differences. FACES The National Cranialfacial Association assists adults and children with cranialfacial disorders. Services include client stories, descriptions, and payment assistance information. GARD Genetic and Rare Diseases Information Center was created to help people find useful information about genetic and rare diseases Genetics Home Reference Consumer-friendly information about human genetics from the National Library of Medicine. Gene Reviews A report about BPES from the National Center for Biotechnology Information. Little Four Eyes A community for parents of children in glasses, contacts, or patches. myFace myFace, formally the National Foundation for Facial Reconstruction exists to transform patients' lives by funding medial procedures and doing research performed at the Institute of Reconstructive Plastic Surgery at NYU Langone Medical Center. The focus is to repair facial disfigurement, and provide social, psychological and financial support to families in need. |
BLOGS AND PERSONAL STORIESCaleb's Eyes
A family's journey with their son who has BPES. It Could Always Be Worse, My Son has BPES A post on the Releigh Moms Blog about a mother's perspective about her son and husband with BPES. Matter Unorganized A post about a family's journey about their son being born with BPES. Also see this video on the blog. Ryan's Special Eyes A mom's blog on her thoughts, fears, and concerns about her son's journey with BPES. 7 Things to Do When People Point Out Children's Differences This brief article is a great way to heighten awareness for ourselves and others of how to treat each other. |
websites and articles about P.O.F.Center for Young Women's Health
A division of the Boston Children's Hospital, this resource provides resources for teens with POF. The Infertility Voice This blog has basic facts and articles including content about: a personal story, how to talk to your doctor, and hormone replacement therapy. The Journal of Reproductive Health This links to a case report about a woman with BPES who has POF. Mayo Clinic The Mayo Clinic has a helpful page about the basics of POF including symptoms, tests, and how to cope. Resolve This National Infertility Association has information and resources for reproductive health. Your Fertility Friend This resource helps prospective parents from around the world better understand fertility options, fertility treatment, and the costs associated with these options. |
Forums
Facebook Groups: BPES, BPES, BPES
There are three very active facebook groups, all titled BPES where people post happy stories, cute pictures, unexpected questions, their struggles, and much more. This is an excellent resource to connect with hundreds of people with BPES and their family members. Two groups are closed and one is public.
Yahoo Group
Join this group to post questions to over 1,000 members, see pictures, or research up old posts from the past 15 years.
The BPES Foundation has chosen not to have a forum on this site at this time since the four groups listed above serve as a great resource for this type of support. If you know of other great resources, please contact us.
There are three very active facebook groups, all titled BPES where people post happy stories, cute pictures, unexpected questions, their struggles, and much more. This is an excellent resource to connect with hundreds of people with BPES and their family members. Two groups are closed and one is public.
Yahoo Group
Join this group to post questions to over 1,000 members, see pictures, or research up old posts from the past 15 years.
The BPES Foundation has chosen not to have a forum on this site at this time since the four groups listed above serve as a great resource for this type of support. If you know of other great resources, please contact us.