When Effie’s son, Ford, was born with an extremely rare genetic condition called CTNNB1 syndrome she dove headfirst into the world of advocacy. To help herself and others cope with and manage raising a child with a disability or rare genetic condition, Effie started the Once Upon a Gene podcast. In this podcast, she shares her personal stories and interviews other people impacted by rare conditions as well as, parents, advocates, doctors, scientists, and more.
Care Partner Focus
ANGEL AID
ANGEL AID sources research, relief, and inspiration for mothers of children with rare diseases. Join their community to connect with other Rare Mothers, learn the tools of self-care, and be listened to without judgement.
The International Pain Foundation (iPain)
iPain is devoted to advancing access and quality care in order to help people suffering from a variety of muscular skeletal, inflammatory, neurological, emotional, degenerative and often rare conditions that involve chronic pain through education, awareness, and access to care projects.
Caregiver Action Network
The Caregiver Action Network is a family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. It supports family care partners through education, information, referral services, and advocacy.
