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- Iron Replacement in HHT
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds or Epistaxis
- Entering the Therapeutics Age: A New Era for HHT Treatment (Recorded)
Drug Therapy
Drug Therapy
- A New Option for Chronic Nosebleeds: Is Sclerotherapy Right for You? (Recorded)
Anemia/ Iron Deficiency, Nosebleeds
Anemia/ Iron Deficiency, Nosebleeds or Epistaxis
- United States Map of Nasal Sclerotherapy Providers
Anemia/ Iron Deficiency, Nosebleeds
Anemia/ Iron Deficiency, Clinicians First Time Seeing a Patient with HHT, Nosebleeds or Epistaxis
- Stopping the Flow: A Comprehensive Guide to HHT Nosebleed Management (Recorded)
Anemia/ Iron Deficiency, Nosebleeds
- Mi CHECKLIST Sobre: HHT Cuidados
- Mi CHECKLIST Sobre HHT Cuidados: Diagnóstico
Newly Diagnosed
- Mi CHECKLIST Sobre HHT Cuidados: Mi Hijo
HHT in children
- El Papel de la Genética en HHT (para pacientes)
Genetics
- Salud, Embarazo y HHT en las Mujeres
Pregnancy & Women’s Issues
- Malformaciones Arteriovenosas (pulmonares) y HHT
Lungs
- Niños y HHT
HHT in children
- Malformaciones Vasculares Hepáticas (hígado) y HHT
Liver
- Imágenes Diagnósticas y HHT
Brain, Gastrointestinal, HHT in children, Newly Diagnosed
- Diagnóstico de HHT
Newly Diagnosed
- Hemorragia Gastrointestinal y HHT
Gastrointestinal, Newly Diagnosed
- Hemorragias Nasales (epistaxis) y HHT
Newly Diagnosed, Nosebleeds
- Malformaciones Vasculares Cerebrales y HHT
Brain, Newly Diagnosed
- Anemia, Deficiencia de Hierro y HHT
Anemia/ Iron Deficiency, Newly Diagnosed
- How to Be an HHT Changemaker Part 2: Educate Your Local Provider (Recorded)
Useful Links to Outside Organizations
Clinicians First Time Seeing a Patient with HHT, HHT Continuing Education
- How to Be an HHT Changemaker Part 1: Drive Research (Recorded)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Mental Health, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
- NEW Criteria! Groundbreaking Trial for HHT: Learn About Pazopanib (Recorded) Anemia/ Iron Deficiency, Drug Therapy, Nosebleeds Drug Therapy, Useful Links to Outside Organizations
- Cure HHT Canada
Useful Links to Outside Organizations
Useful Links to Outside Organizations
- Caring for HHT Through the Generations (Recorded)
Anemia/ Iron Deficiency, Drug Therapy, Genetics, HHT in children
- CME
HHT Continuing Education
- Pazopanib: A Groundbreaking Trial for HHT (Recording) Anemia/ Iron Deficiency, Drug Therapy, Nosebleeds Anemia/ Iron Deficiency, Drug Therapy, Nosebleeds or Epistaxis
- Guías clínicas internacionales HHT (2020)
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Gastrointestinal, HHT in children, Heart, International Guidelines for Screening and Treatment, Liver, Lungs
- Listas de verificación de atención y síntomas del paciente
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Gastrointestinal, HHT in children, Heart, International Guidelines for Screening and Treatment, Liver, Lungs, Pregnancy & Women's Issues
- Mi CHECKLIST Sobre HHT Cuidados: Embarazo y Parto
Pregnancy & Women’s Issues
- Mi CHECKLIST Sobre HHT Cuidados: Adolescencia
HHT in children
- Mi CHECKLIST Sobre HHT Cuidados: Malformaciones Arteriovenosas Pulmonares (MAVP)
Lungs
- Mi CHECKLIST Sobre HHT Cuidados: Malformaciones Vasculares Hepáticas (MVH)
Liver
- Mi CHECKLIST Sobre HHT Cuidados: Sangrado Gastrointestinal
Gastrointestinal
- Mi Checklist Sobre HHT Cuidados: Malformaciones Vasculares Cerebrales (MVC)
Brain
- The Role of Genetics in HHT (for patients)
Genetics, Newly Diagnosed
- The Role of Genetics in HHT (for providers)
Genetics
- Abstracts – 14th HHT International Scientific Conference (2022)
Anemia/ Iron Deficiency, Brain, COVID-19, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, International Guidelines for Screening and Treatment, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Scientific Newsletter, Skin, Useful Links to Outside Organizations
- Executive Summary – 14th HHT International Scientific Conference (2022)
Anemia/ Iron Deficiency, Brain, COVID-19, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, International Guidelines for Screening and Treatment, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Scientific Newsletter, Skin, Useful Links to Outside Organizations
- HHT Family Ambassadors & Communicating with Family
Mental Health, Newly Diagnosed
- Angel Flight NE
Useful Links to Outside Organizations
Useful Links to Outside Organizations
- Uncovering Your Roots: Decoding Genetic Testing
Genetics, Newly Diagnosed
- Iron and HHT: Boosting Your Health & Energy with Iron-Rich Foods
Anemia/ Iron Deficiency
- Dietary Iron & HHT
Anemia/ Iron Deficiency
- Research Roundtable: An Inside Look at Exciting Clinical Trials
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Mental Health, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues
- The Connection Between HHT and PH
Heart, Lungs
- Nosebleed Management – Nurse Cards
HHT in children, Newly Diagnosed, Nosebleeds
- Back to School (tips for caregivers of children with HHT)
HHT in children, Newly Diagnosed, Nosebleeds
- PH and HHT: Signs, Symptoms and Disease Management (Recorded)
Heart, Lungs, Newly Diagnosed
- Development and performance of a hereditary hemorrhagic telangiectasia-specific quality-of-life instrument
Clinicians First Time Seeing a Patient with HHT, Nosebleeds or Epistaxis
- Heartland Regional Genetics Network
Genetics, Useful Links to Outside Organizations
Genetics
- HHT Frontlines – Scientific Newsletter
Scientific Newsletter
- A Comprehensive Guide to Managing Your HHT
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Genetics, HHT in children, Liver, Lungs, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
Clinicians First Time Seeing a Patient with HHT
- Bedside to Bench: How the HHT Community Drives Research Initiatives (Recorded)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, Liver, Lungs, Nosebleeds, Pregnancy & Women’s Issues
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, Heart, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues
- Las Guías Internacionales de HHT: Epistaxis – Tratamiento Farmacológico (Grabado)
Nosebleeds or Epistaxis
- HHT International Guidelines: Brain Vascular Malformations (VMs) (Recorded)
Brain
Brain
- Physician Webinar: The Role of Liver Imaging in HHT (Recorded)
Clinicians First Time Seeing a Patient with HHT, Liver
- Giving hereditary haemorrhagic telangiectasia the attention it deserves
Anemia/ Iron Deficiency, Nosebleeds or Epistaxis
- International HHT Guidelines: Diagnosis
Genetics, Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT, International Guidelines for Screening and Treatment
- International HHT Guidelines: Epistaxis/Nosebleed Management (Recorded)
Nosebleeds
Nosebleeds or Epistaxis
- Las Guías Internacionales de HHT: Epistaxis en HHT (Grabado)
Nosebleeds
Nosebleeds or Epistaxis
- International HHT Guidelines: Liver Vascular Malformations (Recorded)
Liver
Liver
- International HHT Guidelines: Pulmonary AVMs (Recorded)
Lungs
International Guidelines for Screening and Treatment, Lungs
- HHT Medical Emergency Wallet Card
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- International HHT Guidelines: Pregnancy and Women’s Issues (Recorded)
Pregnancy & Women’s Issues
Pregnancy & Women's Issues
- Nuts and Bolts of A Clinical Trial – the PATH-HHT Study (Recorded)
Drug Therapy
Drug Therapy
- International HHT Guidelines: Pediatrics (Recorded)
HHT in children
HHT in children
- Meta | Science Discovery Platform
Useful Links to Outside Organizations
Useful Links to Outside Organizations
- Las Guías Internacionales de HHT: Anemia (Recorded)
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency, International Guidelines for Screening and Treatment
- Cure HHT Actualizaciones Oficiales de Salud: Coronavirus Disease (CV)
COVID-19
COVID-19
- Mi Checklist Sobre Cuidados de HHT: Nasales
Nosebleeds
- Mi CHECKLIST Sobre Cuidados de HHT: Anemia
Anemia/ Iron Deficiency
- International HHT Guidelines: GI Bleeding Management
Gastrointestinal
Gastrointestinal, International Guidelines for Screening and Treatment
- International HHT Guidelines: Anemia (Recorded)
Anemia/ Iron Deficiency
- International HHT Guidelines – Overview (Recorded)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Insurance, Liver, Lungs, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, International Guidelines for Screening and Treatment, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- NIH & Genetic Alliance – Coronavirus Vaccines (Recorded)
COVID-19
COVID-19
- COVID Vaccine Infographic
COVID-19
COVID-19
- COVID-19 Official Updates Page
COVID-19
COVID-19
- HHT and COVID-19: Basics and What We Know in HHT
COVID-19
COVID-19
- HHT and COVID-19: Vaccines
COVID-19
COVID-19
- HHT and COVID-19: Clotting and Anemia
Anemia/ Iron Deficiency, COVID-19
COVID-19
- WEBINAR: Nociones básicas y generales sobre HHT (en español) (Recorded)
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Lungs, Newly Diagnosed, Nosebleeds
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Gastrointestinal, Lungs, Nosebleeds or Epistaxis
- Virtual Meet-Up: HHT & COVID – 1 Year Later (Recorded)
Anemia/ Iron Deficiency, COVID-19, Lungs, Nosebleeds
Anemia/ Iron Deficiency, COVID-19, Lungs, Nosebleeds or Epistaxis
- Brain (Cerebral) Vascular Malformations & HHT
Brain
- Nosebleed (Epistaxis) & HHT
Nosebleeds
- Gastrointestinal (GI) Bleeding & HHT
Gastrointestinal
- Imaging & HHT
Brain, Liver, Lungs, Newly Diagnosed
- Liver Vascular Malformations & HHT
Liver
- Anemia, Iron Deficiency & HHT
Anemia/ Iron Deficiency
- Diagnosis of HHT
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Genetics, HHT in children, Liver, Lungs, Newly Diagnosed, Nosebleeds, Skin
- Lung (Pulmonary) Arteriovenous Malformations & HHT
Lungs
- Screening for pulmonary and brain vascular malformations is the North American standard of care for patients with hereditary hemorrhagic telangiectasia (HHT): A survey of HHT Centers of Excellence
Brain, Lungs
- Children & HHT
HHT in children
- Women’s Health, Pregnancy & HHT
Pregnancy & Women’s Issues
- Patient Symptom & Care Checklists
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Gastrointestinal, Genetics, HHT in children, International Guidelines for Screening and Treatment, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- More Than a Nosebleed: HHT
- Efficacy of Timolol in a Novel Intranasal Thermosensitive Gel for HHT–Associated Epistaxis: A Randomized Clinical Trial
Nosebleeds or Epistaxis
- My Teen Years HHT Care Checklist
HHT in children
- My HHT Nosebleed Care Checklist
Nosebleeds
- My HHT Liver VM Care Checklist
Liver
- HHT International Clinical Guidelines (2020)
Newly Diagnosed
International Guidelines for Screening and Treatment
- My HHT GI Bleeding Care Checklist
Gastrointestinal
- My HHT Diagnosis Checklist
Newly Diagnosed
- My HHT Care Checklist
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Mental Health, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
- My HHT Brain VM Care Checklist
Brain
- My HHT Pulmonary AVM Care Checklist
Lungs
- My Child’s HHT Care Checklist
HHT in children
- My HHT Pregnancy & Delivery Care Checklist
Pregnancy & Women’s Issues
- My HHT Anemia and Iron Deficiency Care Checklist
Anemia/ Iron Deficiency
- Ask The Doctor: Tackling Anemia and Iron Deficiency (Recorded)
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Virtual Meet-up: Ask the Doctor – Nosebleeds 101 (Recorded)
Nosebleeds
Nosebleeds or Epistaxis
- Ask the Doctor: HHT and Pulmonary Hypertension (recorded)
Heart, Liver, Lungs
Heart, Liver, Lungs
- PH and HHT Patient Brochure
Heart, Liver, Lungs
Heart, Liver, Lungs
- Physician Fact Sheet
Anemia/ Iron Deficiency, Insurance, Lungs, Newly Diagnosed, Nosebleeds, Skin
Anemia/ Iron Deficiency, Clinicians First Time Seeing a Patient with HHT, Insurance, Lungs, Nosebleeds or Epistaxis, Skin
- Managing Stress and Emotional Hurdles in HHT (recorded)
COVID-19, Mental Health
- Cerebrovascular Malformations in a Pediatric Hereditary Hemorrhagic Telangiectasia Cohort
Brain, HHT in children
Brain, HHT in children
- Navigating the NEW Resource Library (recorded)
- Rose Geranium Oil Compound
Nosebleeds
Nosebleeds or Epistaxis
- Rare Coagulation Disorders Resource Room – HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency, Clinicians First Time Seeing a Patient with HHT
- PubMed – US National Library of Medicine National, NIH
Useful Links to Outside Organizations
Useful Links to Outside Organizations
- MedlinePlus – US National Library of Medicine National, NIH
Useful Links to Outside Organizations
Useful Links to Outside Organizations
- COVID-19: Mind over Matter (recorded)
COVID-19, Mental Health
- Cure HHT Social Media Channels
Newly Diagnosed
- COVID-19 Fact Check Links
COVID-19
- COVID-19 Reliable Resources
COVID-19
- Becoming a Family Ambassador
https://curehht.org/wp-content/uploads/2018/11/HANDOUT-BECOMING-a-FAMILY-Ambassador.pdf
- Bevacizumab (Avastin) Use In HHT
Anemia/ Iron Deficiency, Drug Therapy, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Drug Therapy, Gastrointestinal, Nosebleeds or Epistaxis
- Understanding Your Positive SMAD4 Genetic Result
https://curehht.org/wp-content/uploads/2020/02/Understanding-Your-Positive-SMAD4-Result_Ambry.pdf
Genetics
Genetics
- Bevacizumab for treating HHT patients with severe hepatic involvement or refractory anemia
Anemia/ Iron Deficiency, Drug Therapy, Liver
Anemia/ Iron Deficiency, Drug Therapy, Liver
- The Science Behind the 2019 Scientific Conference (recorded)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Nosebleeds
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Nosebleeds or Epistaxis
- AirMedCare Network
Useful Links to Outside Organizations
- Living with HHT (recorded)
Mental Health, Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Section 504 of the Rehabilitation Act
https://curehht.org/wp-content/uploads/2020/01/Handout-Section_504_Fact_Sheet__Understood.pdf
HHT in children, Useful Links to Outside Organizations
- Future Treatments for Hereditary Hemorrhagic Telangiectasia
Drug Therapy
- Air Ambulance Worldwide
Useful Links to Outside Organizations
- Mercy Flight Southeast
Useful Links to Outside Organizations
- InsuranceWith – Travelling with a Medical Condition
Useful Links to Outside Organizations
- Angel Flight
Useful Links to Outside Organizations
- Air Care Alliance
Useful Links to Outside Organizations
- Genetic Information Nondiscrimination Act (GINA)
Genetics
Genetics
- Medicare Rights Center
Insurance, Useful Links to Outside Organizations
- Kaiser Family Foundation Guide to the Medicaid Appeals Process
Insurance, Useful Links to Outside Organizations
- Patient Advocate Foundation
Useful Links to Outside Organizations
- Ronald McDonald House
Useful Links to Outside Organizations
- Genetic and Rare Diseases Information Center
Useful Links to Outside Organizations
- National Organization for Rare Disorders (NORD)
Useful Links to Outside Organizations
- American Society of Hematology – Physician Resources
Useful Links to Outside Organizations
- American Society of Hematology – Patient Resources
Useful Links to Outside Organizations
- Clot Connect
Useful Links to Outside Organizations
- Anatomy Gifts Registry
Useful Links to Outside Organizations
- Pulmonary Hypertension Association
Useful Links to Outside Organizations
- Systemic bevacizumab for high-output cardiac failure in HHT: an international survey of HHT centers
Drug Therapy, Heart
Drug Therapy, Heart
- Abstracts – 13th HHT International Scientific Conference (2019)
Anemia/ Iron Deficiency, Brain, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Executive Summary – 13th HHT International Scientific Conference (2019)
Anemia/ Iron Deficiency, Brain
Anemia/ Iron Deficiency, Brain, Gastrointestinal
- HHT Lung AVMs – A Tangled Web (recorded)
Lungs
Lungs
- IVF and Preimplantation Genetic Testing for HHT (recorded)
https://youtu.be/CCc3fsKFhAU
Genetics, Pregnancy & Women’s Issues
Genetics, Pregnancy & Women's Issues
- HHT Frontlines Scientific Newsletter (2019)
- Identification of Retinal Vascular Lesions Using Ultra-Widefield Angiography in HHT Patients
- Identification of Retinal Vascular Lesions Using Ultra-Widefield Angiography in HHT Patients
- Anemia and Iron Deficiency in HHT (recorded)
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Healthcare Provider Brochure – Role of a Doctor in HHT Care
- Screening & Treatment of Brain AVMs in HHT (recorded)
Brain
Brain
- Eating for Health: Dietary Choices that Impact Bleeding
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- My HHT Tracker (recorded)
- My HHT Tracker – URL Links
- My HHT Tracker Quick Guide
- Systemic bevacizumab for the treatment of chronic bleeding in HHT
Anemia/ Iron Deficiency, Drug Therapy, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Drug Therapy, Gastrointestinal, Nosebleeds or Epistaxis
- HHT and Insurance: Overview, resources, and out-of-network concerns
Insurance
Insurance
- Pazopanib May Reduce Bleeding in Hereditary Hemorrhagic Telangiectasia
Anemia/ Iron Deficiency, Nosebleeds
Anemia/ Iron Deficiency, Nosebleeds or Epistaxis
- Pregnancy and HHT
https://curehht.org/wp-content/uploads/2018/06/Pregnancy_and_HHT-2012v2.pdf
Pregnancy & Women’s Issues
Pregnancy & Women's Issues
- Endoglin Interacts with VEGFR2 to Promote Angiogenesis
Drug Therapy
- Endoglin Interacts with VEGFR2 to Promote Angiogenesis
Drug Therapy
- HHT: Diagnosis and Management from the Hematologist’s Perspective
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- HHT: Diagnosis and Management from the Hematologist’s Perspective
Anemia/ Iron Deficiency, Drug Therapy
Anemia/ Iron Deficiency, Drug Therapy
- Genetics: Unraveling Your DNA (recorded)
Genetics
Genetics
- HHT Genetic Counseling Services
Genetics
Genetics
- Genetic Testing and HHT
Genetics, Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT, Genetics
- HHT Overview and Screening Guidelines (recorded)
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Applicability of the Curacao Criteria for the Diagnosis of HHT in the Pediatric Population
HHT in children
HHT in children
- Vitamin D levels are Associated with Epistaxis Severity and Bleeding Duration in Hereditary Hemorrhagic Telangiectasia
Nosebleeds
Nosebleeds or Epistaxis
- Vitamin D levels are Associated with Epistaxis Severity and Bleeding Duration in Hereditary Hemorrhagic Telangiectasia
Nosebleeds
Nosebleeds or Epistaxis
- Making the Connection Between Legislative Advocacy and Federal Funding for HHT (recorded)
- HHT Frontlines Scientific Newsletter (2018)
- Avastin Indication Table
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds or Epistaxis
- The Current Role of Bevacizumab in the Treatment of Hereditary Hemorrhagic Telangiectasia Related Bleeding
Drug Therapy
Drug Therapy
- Intravenous Bevacizumab for Refractory Hereditary Hemorrhagic Telangiectasia Related Epistaxis and Gastrointestinal Bleeding
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds or Epistaxis
- HHT is More than a Bleeding Nose – What an ENT Doctor Needs to Know About HHT and Why.
Skin
Nosebleeds or Epistaxis, Skin
- An Overview of Hereditary Hemorrhagic Telangiectasia (HHT)
https://youtu.be/z2gALD8xSNE
- How to Guide: Fundraiser for HHT
https://curehht.org/wp-content/uploads/2018/01/HOW-TO-GUIDE_Any-Fundraiser.pdf
- How to Guide: Birthday Donations for HHT
https://curehht.org/wp-content/uploads/2018/01/HOW-TO-GUIDE_Birthday-Donations-for-HHT.pdf
- HHT Scientific Conference Summaries (recorded)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Nosebleeds, Pregnancy & Women’s Issues, Skin
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Pulmonary Arteriovenous Malformations (PAVMs) and Hereditary Hemorrhagic Telangiectasia (HHT)
Lungs
Lungs, Nosebleeds or Epistaxis
- Surgical Treatment vs Nonsurgical Treatment for Brain Arteriovenous Malformations in Patients with HHT: A Retrospective Multicenter Consortium Study
Brain
Brain
- Living with HHT: Understanding and Managing Your Hereditary Hemorrhagic Telangiectasia
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Diagnosis and Procedure Codes for HHT
Insurance
Clinicians First Time Seeing a Patient with HHT, Insurance
- Surgeon General’s My Family Health Portrait
Genetics
- My Family Has HHT Pamphlet
HHT in children, Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT, HHT in children
- Abstracts – 12th HHT International Scientific Conference (2017)
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Executive Summary – 12th HHT International Scientific Conference (2017)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Mental Health, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Learn More About HHT Brochure
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Hereditary Haemorrhagic Telangiectasia: Novel cardiopulmonary insights
Heart, Liver, Lungs
Heart, Liver, Lungs
- Find Government Offices in Your County
- Centers for Medicare & Medicaid Services
- Centers for Disease Control and Prevention (CDC)
- Children’s Health Insurance Program (CHIP)
- Medicaid.gov
- Disability Benefits – Social Security Administration
- HealthCare.gov
- Genetics Home Reference – U.S. National Library of Medicine, NIH
- The Use of US Health Insurance Data for Surveillance of Rare Disorders: HHT
- Disability Definition According to Social Security Administration
Insurance
Insurance
- Explanation of HHT and the Troubles Caused Throughout the Body
- Health Benefits of Geranium Essential Oil
Nosebleeds
Nosebleeds or Epistaxis
- Pulsed Dye Laser Treatment
Skin
Skin
- Learn About HHT Genetic Testing
Genetics
Genetics
- PH and HHT Physician Brochure
Lungs
- Screening for Pulmonary AVMs
Lungs
Lungs
- Hazardous Natural Health Products in HHT
Drug Therapy
Drug Therapy
- FDA Food and Drug Interactions
Drug Therapy
- Iron Preparation Charts
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Pumping Iron in HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Low Iron Levels and Blood Clots in HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Iron Deficiency in HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Prophylactic Antibiotics
Lungs
- Glossary of HHT Terms
- Epistaxis Severity Score
Nosebleeds
Nosebleeds or Epistaxis
- A Guide to Genetics and Health
- Epistaxis Journal
Nosebleeds
Nosebleeds or Epistaxis
- Difference Between Social Security Income (SSI) and Social Security Disability Insurance (SSDI)
- How to Appeal Health Insurance Denial
Insurance
Insurance
- State Insurance Regulator Roster (2014)
- Anatomy Gift Registry Donor Services Brochure
- #OnMyOwn (recorded)
- HHT: Caring for the Younger Generation (recorded)
HHT in children
HHT in children
- Prevalence and predictors of anemia in HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Ask the Doctor
Newly Diagnosed
- Depression and Post-Traumatic Stress Disorder in Individuals with HHT
Mental Health
- Asymptomatic Pulmonary Arteriovenous Malformations in Children with HHT
HHT in children
HHT in children
- What’s the Skinny on HHT? (recorded)
Skin
Skin
- 20-year Follow-Up Study of Danish HHT Patients – Survival and Causes of Death
Newly Diagnosed
- Effect of Topical Intranasal Therapy on Epistaxis Frequency in Patients with HHT. A Randomized Clinical Trial.
Nosebleeds
Nosebleeds or Epistaxis
- Effect of Bevacizumab Nasal Spray on Epistaxis Duration in HHT. A Randomized Clinical Trial
Drug Therapy, Nosebleeds
Drug Therapy, Nosebleeds or Epistaxis
- ABSTRACT: Effect of Topical Intranasal Therapy on Epistaxis Frequency in Patients with HHT. A Randomized Clinical Trial.
Nosebleeds
Nosebleeds or Epistaxis
- Pumping Iron in HHT (recorded)
- Pulmonary Hypertension and HHT (recorded)
Lungs
Lungs
- Let’s Get Personal – HHT in Women (recorded)
Pregnancy & Women’s Issues
Pregnancy & Women's Issues
- Treatment of Hereditary Hemorrhagic Telangiectasia-Related Epistaxis
Nosebleeds
Nosebleeds or Epistaxis
- HHT Genetic Testing Services – Information for Clinicians
Genetics
- HHT Facts at a Glance
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Diagnosis and Misdiagnosis of HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- My Partner Has HHT
Newly Diagnosed
- HHT & Depression
Mental Health, Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Aging Patients with HHT
- HHT & Stroke
Brain, Lungs
Brain, Lungs
- Living with HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Family Ties: Genetic Testing
Genetics, HHT in children
Genetics, HHT in children
- I Have HHT: For Kids
HHT in children
HHT in children
- Coping with HHT: For Teens
HHT in children
HHT in children
- My Child Has HHT: Screening Guidelines
HHT in children
HHT in children
- Talking to Your Physician about HHT
Newly Diagnosed
- Know the Signs & Symptoms of HHT
Newly Diagnosed
- Advice For People Newly Diagnosed With HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- De Novo Arteriovenous Malformation in a Patient with HHT
HHT in children
HHT in children
- Nosebleed Management in HHT (recorded)
Nosebleeds
Nosebleeds or Epistaxis
- Cerebrovascular Manifestations of Hereditary Hemorrhagic Telangiectasia
Brain
Brain
- Abstracts – 11th HHT International Scientific Conference (2015)
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Executive Summary – 11th HHT International Scientific Conference (2015)
Anemia/ Iron Deficiency, Brain, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Mental Health, Newly Diagnosed, Nosebleeds, Pregnancy & Women’s Issues, Skin
Anemia/ Iron Deficiency, Brain, Clinicians First Time Seeing a Patient with HHT, Drug Therapy, Gastrointestinal, Genetics, HHT in children, Heart, Insurance, Liver, Lungs, Nosebleeds or Epistaxis, Pregnancy & Women's Issues, Skin
- Lower Risk of Intracranial Arteriovenous Malformation Hemorrhage in Patients with HHT
Brain
Brain
- What Does This All Mean to Me and My Family? (recorded)
HHT in children
HHT in children
- Intravenous Bevacizumab for Complications of HHT: A Review of Literature
Drug Therapy
Drug Therapy
- Dose-Response Relationship of Bevacizumab in HHT
Drug Therapy
Drug Therapy
- Pathophysiology of HHT and Advances in HHT Research (recorded)
- Hemorrhage Rates from Brain Arteriovenous Malformation in Patients with HHT
Brain
Brain
- Feraheme: Prescribing Information
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Feraheme: Prescribing Information
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Cardiac and Liver Manifestations (recorded)
Heart, Liver
Heart, Liver
- Brain Vascular Malformations in HHT: Knowledge is the Key (recorded)
Brain
Brain
- Hereditary Hemorrhagic Telangiectasia: Genetics and Molecular Diagnostics in a New Era
Genetics
Genetics
- HHT in Children: Talking to Your School Nurse (recorded)
https://youtu.be/POJn7SqXVGU
HHT in children
HHT in children
- Optimal Management of HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Optimal Management of HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- JAMA Clinical Challenge – Red Papules on the Tongue of a Patient with Hemiparesis
Skin
Skin
- Outcomes of Pregnancy in Women with HHT
Pregnancy & Women’s Issues
Pregnancy & Women's Issues
- VEGF Neutralization can Prevent and Normalize Arteriovenous Malformations in an Animal Model for HHT2
Drug Therapy
Drug Therapy
- Impact of Pulmonary Arterivenous Malformations on Respiratory-Related Quality of Life in Patients with HHT
Lungs
Lungs
- Ischaemic Strokes in Patients with Pulmonary Arteriovenous Malformations and HHT: Associations with Iron Deficiency and Platelets
Lungs
- Iron Deficiency and Anemia in HHT (recorded)
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Topical Timolol for the Treatment of Epistaxis in HHT
Nosebleeds
Nosebleeds or Epistaxis
- Complications from Office Sclerotherapy for Epistaxis Due to HHT (Osler-Weber-Rendu)
Nosebleeds
Nosebleeds or Epistaxis
- Clinical Implications of Pulmonary Shunting on Contrast Echocardiography
Lungs
Lungs
- Clinical Implications of Pulmonary Shunting on Contrast Echocardiography
Lungs
Lungs
- Improved Survival Outcomes in Cancer Patients with HHT
- FDA Warning: Faraheme and MRI
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Hemorrhage-Adjusted Iron Requirements, Hematinics and Hepcidin Define HHT as a Model of Hemorrhagic Iron Deficiency
Anemia/ Iron Deficiency
- Cerebral Abscesses among Danish Patients with HHT
Brain, Lungs
Brain, Lungs
- Bevacizumab: Finding its Niche in the Treatment of Heart Failure Secondary to Liver Vascular Malformations in HHT
Heart, Liver
Heart, Liver
- Efficacy of a Topical Sesame/Rose Geranium Oil Compound in Patients with HHT Associated Epistaxis (Article)
Nosebleeds
Nosebleeds or Epistaxis
- Efficacy of a Topical Sesame/Rose Geranium Oil Compound in Patients with HHT Associated Epistaxis
- Brain Vascular Malformation Consortium: Overview, Progress, and Future Directions
Brain
Brain
- Nosebleed Treatment Options
Nosebleeds
Nosebleeds or Epistaxis
- The Young’s Procedure for Severe Epistaxis from HHT
Nosebleeds
Nosebleeds or Epistaxis
- A Long Diagnostic Delay in Patients with HHT
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Genetic Testing for HHT
Genetics
Genetics
- Hepatobiliary and Pancreatic: Pancreatic Vascular Malformations in HHT
Heart, Liver
Heart, Liver
- Hereditary Hemorrhagic Telangiectasia and Risks for Adverse Pregnancy Outcomes
Pregnancy & Women’s Issues
Pregnancy & Women's Issues
- Treatment of HHT Submucosal and Topical Bevacizumab Therapy
Nosebleeds
Nosebleeds or Epistaxis
- Cost Savings through Molecular Diagnosis for HHT
Genetics
- What are the Radiation Risks of CT?
Lungs
Lungs
- Low Serum Iron Levels are Associated with Elevated Plasma Levels of Coagulation Factor VIII and Pulmonary Emboli/Deep Venous Thromboses in Replicate Cohorts of Patients with HHT
Anemia/ Iron Deficiency
Anemia/ Iron Deficiency
- Brain AVM Multiplicity Predicts the Diagnosis of HHT: Quantitative Assessment
Brain
Brain
- Intravenous and Topical Intranasal Bevacizumab (Avastin) in HHT
Nosebleeds
Nosebleeds or Epistaxis
- HHT: An Overview of Diagnosis, Management and Pathogenesis
Genetics
Genetics
- Hereditary Hemorrhagic Telangiectasia: Children Need Screening Too
HHT in children
HHT in children
- Office-based Sclerotherapy for Recurrent Epistaxis Due to Hereditary Hemorrhagic Telangiectasia: A Pilot Study
- Long-Term Therapy with Bevacizumab in HHT
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds
Anemia/ Iron Deficiency, Gastrointestinal, Nosebleeds or Epistaxis
- Role of Contrast Echocardiography in Screening for Pulmonary Arteriovenous Malformation in Patients with HHT
Lungs
Lungs
- Hereditary Hemorrhagic Telangiectasia: Diagnosis and Management
Anemia/ Iron Deficiency, Genetics
Anemia/ Iron Deficiency, Genetics
- Interventional Treatment of Pulmonary Arteriovenous Malformations
Lungs
Lungs
- A Brain Abscess Following Dental Extractions in a Patient with HHT
Lungs
Lungs
- Hereditary Hemorrhagic Telangiectasia: From Molecular Biology to Patient Care
Drug Therapy
Drug Therapy
- Detecting HHT: Dental Hygienists can improve health outcomes by recognizing the first symptoms of this genetic disorder
Clinicians First Time Seeing a Patient with HHT
- An Epistaxis Severity Score for HHT
Nosebleeds
Nosebleeds or Epistaxis
- Advocating for Your Child: 504 Plan
HHT in children
- Clinical Outcomes of Pulmonary Arterial Hypertension in Patients Carrying an ACVRL1 (ALK1) Mutation
Lungs
Lungs
- Hereditary Hemorrhagic Telangiectasia / Avastin
Nosebleeds
Nosebleeds or Epistaxis
- Biology of Vascular Malformations of the Brain
Brain
Brain
- HHT International Clinical Guidelines (2009)
Newly Diagnosed
International Guidelines for Screening and Treatment
- The Pulmonary Vascular Complications of Hereditary Hemorrhagic Telangiectasia
Lungs
Lungs
- HHT: A Clinical and Scientific Review
Genetics
Genetics
- Anesthetic Considerations for the Patient with HHT (Osler-Weber-Rendu Syndrome)
Lungs
Lungs
- Antiestrogen Therapy for HHT: A Double-Blind Placebo-Controlled Clinical Trial
Drug Therapy
- Contrast Echocardiography for Pulmonary Arteriovenous Malformations Screening: Does Any Bubble Matter?
Lungs
Lungs
- Imaging of Hereditary Hemorrhagic Telangiectasia
Genetics
- Pulmonary Arteriovenous Malformations and Migraine: A New Vision
Brain, Lungs
Brain, Lungs
- Bevacizumab Reverses Need for Liver Transplantation in HHT
Heart, Liver
Heart, Liver
- Pharmacokinetic-Pharmacodynamic Correlation from Mouse to Human with Pazopanib, a Multikinase Angiogenesis Inhibitor with Potent Antitumor and Antiangiogenic Activity
Drug Therapy
- Long-Term Outcome in a Patient with Pulmonary Hypertension and HHT
Lungs
Lungs
- A Pulmonary Right-to-Left Shunt in Patients with HHT is Associated with an Increased Prevalence of Migraine
Brain, Lungs
Brain, Lungs
- Liver Transplantation for Cardiac Failure in Patients with HHT
Heart, Liver
Heart, Liver
- A Rare and Misdiagnosed Bleeding Disorder: Hereditary Hemorrhagic Telangiectasia
Newly Diagnosed
- Juvenile Polyposis and HHT
Genetics
Genetics
- What is an Arteriovenous Malformation (AVM)?
Nosebleeds
Nosebleeds or Epistaxis
- Genetics: HHT Overview
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- Genetics: HHT Overview
Newly Diagnosed
Clinicians First Time Seeing a Patient with HHT
- The Curacao Criteria: Consensus Diagnostic Criteria for HHT
Brain, Gastrointestinal, Lungs, Nosebleeds or Epistaxis
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