Patient advocacy support for FAOD
If you or your loved one has been diagnosed with FAOD, remember that you have a
community to support you.
Patient advocacy organizations
The following patient advocacy groups champion FAOD screening and disease awareness.
Additional advocacy organizations can be found at ultrarareadvocacy.com.
Climb is a leading worldwide organization supporting thousands of patients who have over 700 inherited metabolic diseases.www.climb.org.uk
Egg Whites Only*
Egg Whites Only is a collection of FAOD-friendly recipes from websites, blogs, low-fat cookbooks, genetic dietitians, moms and families from across the world. It is community driven and users have the ability to rate and comment on recipes, submit their own recipes, and search recipes based on fat per serving.
FOD Family Support Group*
The FOD Family Support Group provides contact information and website links to labs across the United States that offer newborn screening, diagnostic screening, and clinical consultation.
Global Genes is a leading rare disease advocacy organization with global reach to the worldwide rare disease community of patients, caregivers, advocates, and clinical partners. Their mission is to eliminate the challenges of rare disease.
The International Network for Fatty Acid Oxidation Research and Management (INFORM)*
INFORM was formed in order to promote research and discussion into the cause, diagnosis, and management of inborn genetic errors of fatty acid oxidation.
The Metabolic Foundation*
The Metabolic Foundation provides information, advice, and support to all families with fatty oxidation disorders within the UK and worldwide.www.themetabolicfoundation.com
MitoAction’s vision is to create a community of support that reaches every child, adult, and caregiver affected by a mitochondrial disease.
Learn more about emerging therapies for FAOD.www.mitoaction.org
New England Consortium of Metabolic Programs*
The New England Consortium of Metabolic Programs is available to professionals, patients, and families, providing access to information about metabolic disorders, newborn screening protocols, acute illness protocols, treatment guidelines, transition to adult care, community outreach activities, and support groups. Presentations, videos, brochures, and more are available for download and distribution.
Patient Advocacy at Ultragenyx
At Ultragenyx, the patient advocacy team is passionate about educating and supporting you: patients, families, and caregivers affected by rare and ultrarare diseases. Through this site you can find valuable resources, hear from others who live with rare diseases, and learn more about our commitment to the rare disease patient community.www.ultrarareadvocacy.com
The mission of the Save Babies Through Screening Foundation is to improve the lives of children and their families by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests.www.savebabies.org
Ultragenyx is here to provide support and information for all those affected by FAOD.
*These organizations are an incomplete listing of rare disease support organizations and are not controlled by, endorsed by, or affiliated with Ultragenyx Pharmaceutical Inc. The list is meant for informational purposes only and is not intended to replace your health care professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan.
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