Family Resources
Medical
American Society of Pediatric Otolaryngology
ASPO provides a library of educational videos for parents, as well as a directory to locate a pediatric otolaryngologist near you. Enter just your state (no other information) to see a list of ENTs who are ASPO members.
American Speech-Language-Hearing Association
ASHA offers a comprehensive section on feeding and swallowing disorders in children for parents to learn more. ASHA ProFind helps parents find a nearby SLP who specializes in feeding therapy.
EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. The foundation offers a variety of information for rare disease families, including a Medical Assistance page that lists financial support resources.
Global Genes is dedicated to eliminating the burdens and challenges of rare diseases for patients and families globally. Their Rare Concierge Patient Services provides resources, education, and important connections free of charge.
International Pediatric Otolaryngology Group
IPOG is an international organization that provides education and resources in the form of consensus and guideline papers for both common and complex disorders in pediatric otolaryngology. IPOG offers consensus articles on a variety of pediatric otolaryngology topics including type 1 laryngeal cleft, aspiration, laryngomalacia, obstructive sleep apnea, and more.
National Organization for Rare Disorders
NORD represents all individuals and families affected by rare disease by working at the intersection of care, research, policy and community for all rare diseases. NORD’s Living With a Rare Disease section offers help and support to families facing the many challenges that come with rare diseases.
