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Research, Advocacy, Compassion, Empowerment
Research, Advocacy, Compassion, EmpowermentLatest Newsletters
Upcoming Events
Spring 2011
Click here for the pdf version of this newsletter.
In This Issue
A Message from the US HAEA President
The 2011 US HAEA National Patient Conference – Register Today!
The New US HAEA Patient Empowerment Program is Now Available Online
New on the HAEA web site!
US HAEA Represents Patients at the 2011 AAAAI National Meeting
US HAEA Rare Disease Day Proclamation
The US HAEA Scientific Registry – Join Today!
Your HAEA Patient Services Representatives by Region
A Message From Your US HAEA President
| A Message From The US HAEA President |
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Dear Friends, The approval and availability of new HAE therapies provides each and every HAE friend with an opportunity to work with their physician to design a treatment program that controls symptoms and enables a happy and productive life. The HAE Association–which was founded by and is run by fellow patients–offers your only unbiased source for the information you need to understand and successfully deal with HAE. What’s more, our HAEA Patient Services Representatives stand ready to enthusiastically provide you with knowledgeable, empathetic, and compassionate assistance with any of your HAE needs and questions. In this newsletter, we unveil our Patient Empowerment video series which provides authoritative information on a variety of HAE topics designed to equip our patient community with the knowledge necessary to: work with physicians; get access to a suitable therapy; and, most importantly, lead a normal and productive life. We are excited about the forthcoming HAEA National Patient Conference that will take place during the weekend of September16-18. “Taking charge of your HAE” is the theme for this year’s conference, and the agenda is packed with informative workshops as well as time to interact with fellow patients and world class HAE physician/researchers. The conference will focus on the “freedom” that HAE friends can achieve by taking charge and managing their HAE symptoms. In addition, representatives from pharmaceutical companies that manufacture medicines to treat HAE will also be on hand to answer questions about their treatments. Remember, you are always only a phone call away from being in touch with a friendly and compassionate HAE Patient Services Representative who will work diligently to help you with all of you HAE-related needs! Warmest regards, |
| The 2011 US HAEA National Patient Conference – Register Today! |
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FREEDOM
“Taking Charge of Your HAE”
Why should you attend?…
Imagine opening the door to an elegant Las Vegas ballroom and seeing 700 fellow HAE patients and family members! You are welcomed with open arms to: share your HAE story hear from world-leading HAE physicians train to be an HAE ambassador (volunteer)
better understand access to and reimbursement for HAE therapies learn about administration of new drugs
understand how to speak to and partner with your HAE physician visit sponsor tables to speak directly to their representatives enjoy great food and time to socialize with HAEA friends
and more!
There will be a programs for kids 5 – 13 and one for teens 14-19.
And the hotel houses its own multi-screen cinema and bowling alley!
And if you need yet one more reason to be there….
Saturday night includes dinner and Las Vegas entertainment!
We want to see every single one of you and all of your family, too, in Las Vegas. Be a part of the largest recorded gathering of HAE patients in the world! REGISTER early! – just click here
or go to www.haea.org any time and click on the link there.
FREEDOM… the 2011 US HAEA National Patient Conference is where you will learn how taking charge of your HAE can help you live your life to the fullest.
See you there!
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| The New US HAEA Patient Empowerment Program is Now Available Online |
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Announcing the
For more than a decade, the sole focus of the US HAEA has been doing whatever is We believe patients can be empowered to do so when provided with:
For patients with a rare disease like HAE, education and empowerment can be determining factors in receiving appropriate medical care in a timely fashion…or not. We are dedicated to doing everything possible so that HAE patients are able to succeed with their own individualized, patient-centered treatment plan.
We hope you will take advantage of this online US HAEA Patient Empowerment program
Log on now to |
| New on the HAEA web site! |
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Be sure to check in often at www.haea.org!
New on the web site:
*Video of HAE kids having a great time at the 2009 HAEA National Patient Conference
*A new patient story (take a minute to look at the stories in the archive, too!)
*National Patient Conference Registration link (invite your family to come too!)
And don’t forget to check out the What is HAE? tab to refresh your memory on HAE Symptoms, Attack Triggers, Diagnosis, and the helpful Angioedema Table.
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| US HAEA Represents Patients at the 2011 AAAAI National Meeting
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Because the American Academy of Allergy, Asthma & Immunology is the largest professional medical organization in the United States devoted to the allergy/immunology specialty which includes diseases like HAE, the US HAEA attends its annual meeting to speak with its nearly 2,500 meeting attendees. It was great to see that HAE still ranks as one of the highest topics of interest at the AAAAI’s national meeting, often attracting larger audiences than traditional seminars on allergy, asthma and immunology. The HAE Association continues to advocate for a focus on new research on HAE within the allergy/immunology physician community. |
| US HAEA Rare Disease Day Proclamation |
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NORD’s Rare Disease Day is recognized each February. This year, the US HAEA partnered again with NORD to raise rare disease education and awareness. With the HAE Association headquarters located in Honolulu, Hawaii, the HAEA helped to create a state proclamation signed by the Governor of Hawaii proclaiming Feb. 28, 2011 as Global Rare Disease Day in Hawaii. This is a great first step toward a world-wide day specifically for HAE!
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| US HAEA Scientific Registry – Join Today! |
 Patient Driven Research for a Cure!If you check the HAEA web site counter, you will see that
we have far exceeded our goal of 500 registrants by the end of 2010!
But the Registry is still looking for every person who has been diagnosed with HAE and all those who are a blood relative of someone with HAE to join!
So if you have not already signed up, please go to www.haea.org, click on the Get Involved tab, then on Enroll in the Registry. And please encourage your family members to participate in the Scientific Registry, too! Each participant in this great undertaking will improve the life of every HAE patient and bring us closer to a cure. You can make a difference! |
Your Patient Services Representatives by Region
Donna Davis, Assistant Vice President for Patient
Services and Clinical Programs
(808) 216-1029
donna-davis@haea.org
(Supervises All Regions)
Region -1 Michelle Williamson, Director for Patient Services and Clinical Programs
(972) 814-5205
michellewilliamson@haea.org
(Region 1 includes – Alaska, Colorado, Hawaii, Illinois, Kentucky, Missouri, Nevada, New Mexico, South Dakota, Utah and Washington DC)
Region – 2 Lois Perry, Assistant Director for Patient Services and Clinical Programs
(559) 259-0572
loisperry@haea.org
(Region 2 includes – California, Iowa, Maine, Mississippi, Montana, Oregon, Vermont, Virginia and West Virginia)
Region – 3 John Williamson, Patient Services Representative
(972) 984-0621
john@haea.org
(Region 3 Includes – Arizona, Idaho, North Dakota, Pennsylvania, South Carolina, Texas and Wyoming)
Region – 4 Sally Urbaniak, Patient Services Representative
(904) 826-6700
surbaniak@haea.org
(Region 4 includes – Connecticut, Delaware, Florida, Massachusetts, New Hampshire, New York, and Rhode Island)
Region – 5 Jenny Barnes, Patient Services Representative
(252) 585-0763
jennybarnes@haea.org
(Region 5 includes – Alabama, Arkansas, Georgia, Louisiana, Michigan, Minnesota, North Carolina and Oklahoma)
Region – 6 Candi Fuqua, Patient Services Representative
(308) 627-4586
candifuqua@haea.org
(Region 6 includes – Indiana, Kansas, Maryland, Nebraska, New Jersey, Ohio, Tennessee, Washington and Wisconsin)
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For Clinical Trial Referrals, Contact Patient Services/Clinical Programs Representative, John Williamson
(972) 984-0621
john@haea.org
