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.
United States
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.
Chronically Capable
Chronically Capable is an employment platform that connects chronically ill professionals to companies looking to hire a digital workforce and meet the 7% utilization goal required under Section 503 of the Rehabilitation Act.
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.
FasterCures: Patients Count
For too long, patients’ unmet medical needs have been an afterthought, rather than a starting point, for developing medical products that address their priorities and deliver value to the health-care system. FasterCures aims to improve health by driving adoption of methods by which patients’ perspectives shape processes for discovering, developing and delivering medical products and services.
The Rare Disease Diversity Coalition
The Black Women’s Health Imperative launched the Rare Disease Diversity Coalition to address the extraordinary challenges faced by rare disease patients of color. The Coalition brings together rare disease experts, health, and diversity advocates, and industry leaders to identify and advocate for evidenced-based solutions to alleviate the disproportionate burden of rare diseases on communities of color.
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.
Siblings with a Mission
Siblings with a Mission serves and supports siblings and families of individuals with complex health conditions and developmental disabilities.
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.
