The FOD Group website and online 'Communication Network' Newsletters are intended to be used as a worldwide resource for families, friends, clinicians, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a Fatty acid Oxidation Disorder.
We are an All Volunteer national and international support group specifically for Fatty Oxidation Disorders and a 501c3 non-profit corporation [Tax ID# 83-0471342] that raises funds for the training of new FOD Professionals and for future FOD Research, as well as for our daily operations, National Conferences, and probono face-to-face or skype Grief Support for Bereaved Parents, Families, and other adults living with loss from any cause.
Family Stories are shared, questions are answered, nutrition information is discussed, and medical and pharmaceutical updates are offered. You can also view and share our current FOD Brochure and Newsletter, as well as our archive of past newsletters for more information and stories. Additionally, we have videos on how our Group began and how FODs are newborn screened, diagnosed and treated.
If you'd like to become a member of our Group, please 'Join our Group' first ~ then you can also become a part of our very active Email List and facebook Group of FOD Families/Familymembers and Professionals from around the world ~ come join us in supporting both our new and 'old' families living with these rare metabolic disorders!
PO Box 54 Okemos, MI 48805 Tax ID # 83-0471342
We would like input from Parents of FOD affected minor children (also for their affected age 18+ adult that CANNOT answer for themselves), Adoptive Parents, Legal Guardians (ie., that might be a grandparent, aunt etc), and FOD Affected Adults (age 18+ that CAN answer for themselves).
This Survey will also assist our Group in gathering information that will be helpful when we write grants in the future (ie., location in the world, # of hospitalizations, ethnicity, where your Drs are located, etc) to help with funding for our Conferences or other projects.
Even if you have been told it MAY be an FOD or a combination of FOD and mito or Unclassified FOD, but you don’t have a SPECIFIC name to your disorder yet, please feel free to complete the Survey. An FOD diagnosis HAS to be a possibility though.
ALL info is private (unless you give them permission to contact you) – and when I receive the info related to grant writing NO NAMES, etc will be attached.
FOD SURVEY by June 1st!