Resources for Patient and Families

Office for Human Research Protections (OHRP) - Education & Outreach

The Division of Education and Development (DED) at the US Department of Health & Human Services Office for Human Research Protections provides educational materials that are intended for public use and distribution, including information for those considering research participation.

NIH National Library of Medicine MedlinePlus Genetics

MedlinePlus, an online health information resource from the National Library of Medicine (NLM), offers detailed information about the effects of genetic variation on human health, in addition to an extensive collection of health and wellness information.

International Guidelines for the Diagnosis and Management of HHT

Developed by an international panel of HHT experts and patients, the Second International HHT Guidelines for the Diagnosis and Management of HHT provides new evidence-based consensus recommendations that should facilitate the implementation of key components of HHT (Hereditary Hemorrhagic Telangiectasia) care into clinical practice.