Launch New Website and Learn About HHT Brochure

 

New Website

The new website is now structured to include information for the newly diagnosed, tools and resources for patients and physicians to assist with the management and treatment of HHT, full updates on HHT research and clinical trials, as well as how individuals can get involved in raising awareness or organizing grassroots events.

Visit us at www.hht.org and see for yourself what's new. Don't forget to share our address with your doctors, family and friends so they can be current with the latest HHT research and treatments.

Keep checking back because there are lots of new features that will released in the coming weeks and throughout the year.

 

Learn About HHT Brochure

The HHT Foundation, along with our Medical Director, Scientific Research Director and several HHT specialists, re-wrote the comprehensive Learn About HHT brochure to incorporate diagnosis, screening and treatment protocols from the published HHT Clinical Guidelines, along with new information on iron deficiency and anemia, pregnancy, and the screening of children with HHT.

This new brochure is a wonderful resource to patients and physicians alike with inserts highlighting HHT Treatment Centers, Genetic Testing Labs, Facts at a Glance, and numerous resource organizations and websites.

Learn About HHT is the one document that every HHT family needs to have.

DOWNLOAD your copy of the BrochureFacts at a GlanceHHT Treatment Center/Genetic Labs and Resources.

The HHT Foundation is grateful for the generous support and partnership of Ambry Genetics. It is through their education grant that this revision of the Learn About HHT brochure was possible.

 

What's Next?

Over the course of the next year, you will see a significant change in the way the HHT Foundation communicates with its members, the medical community , and the general population at large. We are in the process of branding our activities, revamping our brochures with the latest medical information, conducting significant clinical trials, and participating in key research endeavors. All HHT Foundation programs will continue to be in alignment with our mission and strategic initiatives.

Stay abreast of everything that is going on in the HHT Community by subscribing to receive our website news posts and becoming a member of the HHT Foundation. You can do this on the footer of every page of the new website!

Investing In HHT

IMAGINE a world in which HHT is commonly recognized, easily treated and cured within our lifetime. HHT afflicts the lives of more than 1.4 million people worldwide with most unaware that "nosebleeds in the family" can be something much more and potentially life threatening.

The HHT Foundation has developed a five year strategic initiatives plan that will create the building blocks necessary to find a cure for HHT in our lifetime. To make this happen we need $2 million annually for the next five years.

As the only organization in the world solely focused on HHT patients, you can be sure that your investment in the HHT Foundation will go to the highest return initiatives that can improve life of HHT patients today and in future generations.

An Investment in Your Family's FutureMarianne Clancy, Executive Director of the HHT Foundation, recently sat down with an HHT donor family to update them on the progress of a research project they funded. They went on to say “Our investment in HHT has the promise of being one of the best performers in our portfolio.  What makes this so interesting is, at first we thought it was charity but seeing the results of the project we realized it was really an investment in our family’s future.” They said their financial advisor was also in favor of them making another investment in HHT.  After hearing the rest of their story, we asked if we could share it with our members.  They agreed only if we could continue to maintain their anonymity.  Click HERE to read their story.

Be a Part of the Solution . . . . DONATE NOW!

SURVEY – HHT and Other Medical Conditions

 

If you haven't already participated in this survey, please take a few minutes ....  your feedback is important !

COMPLETE SURVEY -

On July 29, 2013, Dr. Claire Shovlin and her team at the Imperial College London launched the 2013 survey on HHT and Other Medical Conditions.  Your response has been amazing even in the first week.

Dr. Shovlin and her team will update this graph for you month by month, and you can be part of this whether or not you filled in the survey last year.

2013 Shovlin Chart

Your answers to the 2012 survey have already produced two published papers (on nosebleeds, and on blood thinners), with two further papers submitted for publication. It is incredible how powerful the HHT community is when it works together in this way and we are so impressed. The 2013 survey team will give an update for you in the October newsletter.

Thank you in advance for your participation in this survey!

 

Claire Shovlin, Amy Elphick, Zarah Kanwal, Nisha Begum and Zhen Xu Cahilog
(The 2013 Imperial HHT Survey Team)