Nosebleed Management – Nurse Cards

This card contains helpful tips for nosebleed management in a format that is ideal for providers who may not be familiar with the care required for HHT-related nosebleeds. Additionally, the card is available for purchase in our store on durable cardstock.

A Comprehensive Guide to Managing Your HHT

We’ve taken the International HHT Guidelines and distilled them into easily readable factsheets and checklists that can be filled out and given to your physicians. The result is a beautifully bound and curated 48-page publication, A Comprehensive Guide to Managing Your HHT. Order a free complimentary booklet through our Join Us form, or click the…

The Rare Genomes Project

The Rare Genomes Project is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected rare disease who do not have a genetic diagnosis. The goal of their project is two-fold: (1) provide access to testing for families that are genetically undiagnosed and (2) discover previously un-identified gene…

HHT Medical Emergency Wallet Card

In the event of an emergency, this printable compact medical card is wallet-sized and can speak for an HHT patient when they can’t. The card features a description of HHT, recommended medical protocols, common HHT related complications, a link for physicians to review resources, and a place to enter your personal information. Printed cards are…

Mi Checklist Sobre Cuidados de HHT: Nasales

Las listas de verificación “Mi HHT” son una serie de listas de verificación por área temática para que las personas con HHT se autogestionen y las lleven a su médico. Estas listas de verificación se basan en el cuidado recomendado en las guías de HHT.