THANK YOU
This monthly news bulletin is possible through your membership donations.
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16th National Patient & Family Conference DVD
Order Now
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HHT has no boundaries ... from east to west, north to south, young to old ... HHT does not discriminate, it touches every gender, race and age across the globe.
That's why the HHT Foundation is committed to raising awareness about the disease worldwide. Did you know that it is believed that 90% of all people who have HHT don't know they have the disease. This statistic needs to change!
We are thrilled to announce that on March 25th, the HHT Foundation will reveal its' first national media advertisement geared toward identifying the undiagnosed 90% of HHT patients. The Washington Post is working with the National Organization of Rare Disease (NORD) to celebrate 30 years of the passage of the Orphan Drug Act in Congress. The March 25th special edition publication will be dedicated to rare diseases. The HHT Foundation is a member of NORD and we are investing in the opportunity to reach millions of readers worldwide.
Raising awareness of HHT will ultimately save lives through early diagnosis and treatment. WE have invested resources in producing the video, More Than A Nosebleed: HHT, creating the Washington Post ad, lobbying for federal recognition of HHT, hosting medical and scientific conferences, and much more. YOU can raise awareness of HHT by organizing an HHT Walk For A Cure, contacting your Congressional Representative, attending a conference, or watching the video and then passing it on to your family members. If you invest your time, I promise you will save a life!
Nicole Schaefer
Director of Operations
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March Membership Mania
THIS NEWS BULLETIN IS BEING SENT TO CURRENT MEMBERS, OLD MEMBERS, AND PEOPLE WHO HAVE CONTACTED THE FOUNDATION in an effort to increase awareness in our HHT Community. Normally, this News Bulletin is received by members only, along with the Direct Connection newsletter that is issued three times a year (the first issue in 2013 will be in mailboxes within the next few weeks). Please consider joining the HHT Foundation so that you can stay informed. March Membership Mania is going on now.... the cost of membership is equally to the date of the month (i.e, today is March 15th, you can join for $15). Click on the link above or visit our website at www.hht.org. |
HHT Regional Patient & Family Conference
Chapel Hill, North Carolina
DATE: Saturday, April 27, 2013
TIME: 8:00am - 5:00pm
LOCATION: The William & Ida Friday Center for
Continuing Education 100 Friday Center Drive Chapel Hill, NC 21592 COST: $125 PER PERSON (HHT Member Price)
(Includes breakfast, lunch, and materials) HOTEL: Hampton Inn & Suites ($94/night)
6121 Farrington Road Chapel Hill, NC 27517 800-426-7866 (toll free) Mention "HHT" to get group rate. This conference is designed for patients and families affected by HHT, as well as physicians treating HHT patients. Invite your physician to attend this conference so they, too, can benefit from learning how to diagnose and treat HHT as well cultivate relationships with the medical staff at the UNC Chapel Hill HHT Center of Excellence. This is also the perfect opportunity to meet other HHT patients and families in your regional area. Nona Saling, Coordinator for the NC - HHT Regional Networking Alliance (RNA) will be at the conference and eager to meet you. A special table has been reserved for you at lunch to get to know one another better. You can email Nona Saling at nona.saling@nc.rr.com to learn more. MORE INFORMATION
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REGISTER NOW
10th International HHT Scientific Conference
The HHT Foundation is thrilled to be a sponsor of the 10th International HHT Scientific Conference to be held June 12-15, 2013 in Cork, Ireland. The goal of the HHT Scientific Conference is to provide a meeting point for clinical researchers and basic scientists from around the world to have access to the most recent advances in clinical research, therapeutics, and basic research in the field of HHT.
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HHT Study Results Published in the
New England Journal of Medicine
Dr. Claire Shovlin's findings were recently published in the prestigious New England Journal of Medicine. The publication entitled, "Antiplatelet and Anticoagulant Agents in Hereditary Hemorrhagic Telangiectasia" Thousands of medical professionals will be made aware of HHT through this publication. We are so grateful to Dr. Shovlin and her dedicated team of researchers. We are equally grateful for over 1,200 HHT patients from around the world that participated in this survey. Click here to read the article.
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Pumping Iron in HHT 
What is Iron? In the body, it is an essential part of hemoglobin, which is the molecul in your blood that transports oxygen from your lungs to the cells in your body.
HHT also raises your risk of iron deficiency. Iron deficiency anemia occurs when your body's iron stores get very low and you can not produce enough red blood cells to transport oxygen through your body. Symptoms of iron deficiency anemia include fatigue, lack of energy, pale skin, depressed immune function, and reduced mental performance.
We would like to thank Ronalee Robert, RD, CDE, from St. Michael's Hospital in Canada for her presentation entitled, "Pumping Iron in HHT" at the 2012 National Conference in Orlando, FL.
Click here to see more.
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Organize a Local Blood Drive to Promote June HHT Awareness Month
A nosebleed may often be overlooked, but for some it should be a warning sign. June is National HHT Awareness Month and the perfect time to educate the public about HHT and also the importance of donating blood. People need to be aware that frequent nosebleeds may be a symptom of HHT.
Doc Hanks, RNA leader for Louisiana, Arkansas and Mississippi has once again stepped up to serve as the National HHT Blood Drive Coodinator. Last year he coordinated several blood drives in his home state of Louisiana and helped several other families to plan blood drives in their communities.
All it takes is one phone call to a blood center near you.
Ask to speak with the blood drive coordinator. Tell them your HHT story, especially if someone in your family is dependent on regular blood transfusions.
Please contact Doc Hanks at docwg56@yahoo.com or call him at (337)802-5335 if you would like to schedule an HHT Awareness Blood Drive in your community.
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MEMBERS MONTHLY DRAWING
Congratulations to Ted and Carol S. from New Jersey who was chosen as our winner of the February Member's Monthly Drawing.
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