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.
Peer Support
Child Neurology Foundation
The Child Neurology Foundation (CNF) connects partners from all areas of the child neurology community so those navigating diagnosis, management, and care have ongoing support from those dedicated to finding treatments and cures. Parents, care partners, families, and people living with neurological conditions can find information, education, and one-on-one peer support when it’s needed most.
Rare in Common Podcast
The 2017 Emmy-nominated Rare in Common documentary gave people from the rare disease community an opportunity to tell their stories. Today, the storytelling has expanded to the world of audio with the Rare in Common podcast. Whether you watch or listen, prepare to be moved and inspired by those touched by rare disease.
The Mighty
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.
Our Odyssey
Our Odyssey connects young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.
Remember the Girls
Remember the Girls’ mission is to raise awareness of the many issues facing female carriers of x-linked recessive genetic disorders; to provide a forum for x-linked females to share their stories, ask questions, provide and receive emotional support, and develop friendships; and to advocate for increased attention of the medical community to the physical and emotional issues of females who carry x-linked disorders.
Parent to Parent USA
Parent to Parent USA provides emotional & informational support for families of children who have special needs.
Rare New England (RNE)
Rare New England’s mission is to bring together New England patients, families and providers touched by rare and complex disorders. The organization offers educational opportunities, creates awareness of available resources, and builds foundations for support to improve patient quality of life.
National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
Global Genes
Global Genes is a leading rare disease advocacy organization. Its mission is to build awareness, educate the global community, and provide critical connections and resources that empower advocates to become activists for their disease.
