Heartland Regional Genetics Network

Heartland Regional Genetics Network ofrece materiales gratuitos en español para la comprensión de la genética y las enfermedades raras.

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) pro…

Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)

In March 2020, Cure HHT was 1 of 30 organizations selected to participate in the Chan Zuckerberg Initiative (also known as CZI) Rare is One Project. This ambitious project is lifting up the work that patient communities are doing to accelerate resear…

International HHT Guidelines – Overview (Recorded)

Join Dr. Marie Faughnan, Director, Toronto HHT Centre of Excellence as she provides an overview of the newly updated International HHT Guidelines and how they are used to set the standard of care globally for the diagnosis and treatment of HHT. Dr. F…

Patient Symptom & Care Checklists

Download and distribute “My HHT Care Checklists” to patients to complete and return to you, including: HHT Care, HHT Diagnosis, Anemia, Brain VMs, Pediatric, Teen Years, Nosebleed, GI Bleeding, Liver VMs, Pregnancy & Delivery, and Pulmonary AVMs….

Understanding Your Positive SMAD4 Genetic Result

The Science Behind the 2019 Scientific Conference (recorded)

Philippe Marambaud, PhD and Andy White, MD discuss important advances in HHT research which were presented at the 2019 HHT International Scientific Conference in Puerto Rico. Learn about advancements in drug therapies for bleeding, screening and trea…

Genetic Information Nondiscrimination Act (GINA)

Afraid of genetic discrimination? You are protected by GINA, a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information. This resource provides a…

Abstracts – 13th HHT International Scientific Conference (2019)

Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.

IVF and Preimplantation Genetic Testing for HHT (recorded)

Katie Wusik Healy, LGC, MS, Genetic Counselor at the Cincinnati HHT Center of Excellence, talks about pre-implantation genetic testing (PGT), including what you might consider before pursuing PGT. In addition, options for determining if a child has H…

Genetics: Unraveling Your DNA (recorded)

Jaime Jessen, BSc, MSc, CGC, Certified Genetic Counselor and Medical Science Liaison at Impact Genetics and LabCorp, provides an informative presentation on the inheritance pattern of HHT, how to identify your family gene mutation and the benefits an…

HHT Genetic Counseling Services

Your doctor may refer you to a genetic counselor to discuss your risk for HHT and your genetic testing options. The role of a genetic counselor is to help you better understand your genetic risks and the tests available to you. Most HHT Centers of Ex…

Genetic Testing and HHT

HHT Scientific Conference Summaries (recorded)

  Drs. Hughes, Faughnan and Andrejecsk provide a first hand synopsis of the HHT science presented in Dubrovnik, Croatia where over 200 voices were heard from 23 countries. They reviewed the 12th HHT International Conference Executive Summary of…

Abstracts – 12th HHT International Scientific Conference (2017)

Angiogenesis. This article can be purchased directly from the publisher. Click to view the article description and purchase options.