Grants for Childhood HHT Treatment

Up to $10,000 is Available for Medical Treatment

CaptureDo you know a child with HHT who could benefit from a medical grant? Maybe a family who is struggling to pay for their child's HHT treatments? United Healthcare Children's Foundation is offering grants to assist with childhood medical care and treatment.

If you answer yes to the following questions, the child may be eligible for grant assistance:

1) Is the child 16 or younger, living in the United States and facing health-related challenges?

2) Is the child currently covered by a commercial health insurance plan?

3) Does the parent or legal guardian meet the current Adjusted Gross Income levels as reported on last year's IRS 1040?

4) Does the commercial health insurance plan cover only a portion or none of the necessary treatment, services or equipment?

>Click here to read the full brochure for details.

Visit www.uhccf.org for more information on the foundation and the grant program. 

 

Bevacizumab Clinical Trial – Stanford, CA

CLINICAL TRIAL : A Randomized Controlled Trial of Bevacizumab for HHT-Related Epistaxis

AvastinCure HHT, in partnership with the American Academy of Otolaryngology, is funding this important research as a follow-up to the Cure HHT North American Study of Epistaxis (NOSE Study) in which the efficacy of four agents (i.e., Bevacizumab, Estriol, Tranexamic Acid, and Saline) were tested in the first large-scale multi-center clinical trial.

The Stanford Sinus Center at the Stanford School of Medicine is poised to carry out the first randomized, double-blind, placebo-controlled clinical trial of bevacizumab injection versus saline control for the management of HHT-related epistaxis, by which they hope to shift the current clinical practice paradigms in treating this debilitating disease.

Study Aims:

  1. Determine if intranasal bevacizumab injection decreases nosebleed frequency and severity compared to placebo when used in conjunction with electrocautery for patients with HHT, as measured by the ESS scoring system.
  2. Determine if intranasal bevacizumab injection results in a greater improvement in quality of life compared to placebo when used in conjunction with electrocautery for patients with HHT.
  3. Determine the cost-effectiveness of intranasal bevacizumab injection compared to placebo when used in conjunction with electrocautery for patients with HHT.

Question: 

Does Avastin injection inside the nose at the time of nasal bipolar cautery reduce nasal bleeding?

Study Procedure: 

  • Injection of Avastin or placebo inside the nose at the time of nasal electrocautery surgery (while patient is asleep)
  • Patient completed surveys about nasal bleeding at 1 month, 2 months, 4 months, and 6 months after treatment

Who can participate:

  • Anyone 18 or older with HHT who would like to have electrocautery for their nasal bleeding AND
  • Can complete surveys at the four time points after surgery

Who cannot participate:

  • Anyone receiving prior treatment with Avastin within the past 1 year
  • Anyone who has had nasal electrocautery within the past 6 months
  • Pregnant women
  • Anyone with immune system disease
  • Children under 18

What is required of me to participate?

  • Travel a minimum of one (1) trip to Stanford, CA - a visit in the clinic and surgery the next day*
  • Have reliable contact information to complete the surveys
  • Complete several surveys by mail after surgery at 1 month, 2 months, 4 months, and 6 months
  • There is no monetary compensation for participation

What do I have to do to participate?

*Thanks to the generosity of  one of our donors, Cure HHT is pleased to offer financial support to offset reasonable travel expenses to Palo Alto, CA for Bevacizumab (Avastin) clinical trial participants who have a documented financial need. Detailed information will be made available by the principal investigator when a participant is enrolled in the clinical trial.

Treating Chronic Nosebleeds in HHT: Today’s Care and Future Directions

Presented By: Dr. Amelia Clark and Dr. Peter Hwang, Stanford Sinus Center

Join Stanford School of Medicine Otolaryngologists, Dr. Amelia Clark and Dr. Peter Hwang, as they discuss current treatments and new research in treating HHT-related nosebleeds. Learn about a new clinical trial going on now that uses Avastin to treat bleeding- A Randomized Controlled Trial of Bevacizumab for HHT-Related Epistaxis, at Stanford Sinus Center that is co-funded by Cure HHT.