Angel Flight NE is a non-profit organization providing FREE medical air transportation for individuals with limited financial resources, including those suffering from rare diseases, to obtain life-saving medical treatment. Angel Flight NE’s primary service area covers 9 states including Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont. However, they…

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.

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 is a patient-driven research project through the Broad Institute that performs full genome sequencing on families with suspected singe gene disorders 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…

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…