Hello
Navigating Rare was founded by Jessica Fabre, a mother who has experienced the frustrations that come with having a child with a rare disease while navigating the healthcare system in a search for answers. Her daughter's journey inspired Jessica to advocate for early genetic screening and patient-centered care. Through education and advocacy, Jessica strives to make a difference in the lives of those affected by rare diseases, while collaborating with physicians to help them better understand the gaps in healthcare many rare patients face.
Dear Mama: Stories of an Extra Lucky Life
Join Extra Lucky Moms a Community of Disability Support
Read Jessica and Sophie's chapter and 28 raw inspiring stories from Moms who received a rare or disability diagnosis for their child.
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When received as a caregiver, this book offers hope and real life accounts from Moms who have been through being told their child has a rare disease or disability.
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As, a Medical Provider or Genetic Counselor this is a must have to provide patient's families when delivering a rare or disability diagnosis.
Providers please email jessica@navigatingrare.com for wholesale pricing
Grab a cup of coffee and listen to The Extra Lucky Podcast. Jessica shares Sophie's story in episode 10 and her partnership as a Parent Ambassador with Fore Genomics in episode 12.
About Jessica's Partnership as a Parent Advocate with Fore Genomics
As Jessica navigated the available healthcare solutions for her daughter Sophie, she realized that readily available healthcare testing would not answer questions about her daughter's condition. It wasn't until Jessica got genetic testing for Sophie that her questions were answered. Jessica is determined to help every parent understand that this is an option, and one that requires a proactive mindset. Jessica found a partner in Fore Genomics that shared her mission of enabling parents to know more about their child’s health through early genetic testing. Parents who know more and know early, are in the best position possible to manage their child’s condition in every way possible. Jessica reached out to Matt Pelo, CEO of Fore Genomics, and has joined the team as a Parent Advocate for Fore Genomics’ genetic test for children FORESITE 360 (www.foresite360.com). FORESITE 360 is the most comprehensive genetic test possible for newborns, infants and children giving parents a complete understanding of their child’s genetic pre-disposition to health risk.
It’s important for parents to educate themselves on the power of genetic testing for their child. Whether your child is exhibiting symptoms, or you just want to understand their health, this is the right step. Jessica would like to help every parent take the steps to learn, test their child, and understand everything they can about the future of their child’s health. Jessica has an educational resource summary available at www.foresite360.com/education and regularly speaks to parents, physicians and clinical professionals on early genetic testing and her experience with rare disease navigation. Jessica makes herself available to speak to individual parents or groups that need help educating themselves on rare disease management and early genetic testing. Contact her to learn more.
Some quick information on FORESITE 360…
FORESITE 360 is a 100% DNA test addressing both disease pre-disposition and medication allergy and dosage health issues. FORESITE 360 currently looks at children’s pre-disposition to over 300 diseases and expands annually to include industry researched and verified gene-conditions (~30 conditions on average added annually). Every year, through age 18, parents receive an updated genetic report on their child notifying them if any new genetic discoveries are important to their child’s health. FORESITE 360 is an at-home cheek swab test and comes complete with all physician approvals and expert genetic counseling necessary. No office visits, everything from the privacy of your home.