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HAEA TODAY
Fall 2009
Newsletter
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| A Message From Your HAEA President |
Dear HAE Friends,
The future for HAE patients has never looked brighter!
We now have a safe and effective non-steroidal medicine that is approved for preventing attacks, and, with any luck, the FDA will approve two additional products for treating attacks when the dreaded swelling has already begun.
I would like to cordially invite everyone to attend the HAEA's National Patient Conference in Orlando, Florida that begins with a reception on Friday evening, October 23, 2009. You can mingle with fellow patients, learn everything there is to know about new medicines and how to go about getting maximum insurance reimbursement, and get questions answered by expert HAE doctors. We'll throw in a heavily discounted hotel rate, a bunch of free food, and some fun entertainment on Saturday night!
Looking forward to seeing everyone in Orlando! With warmest regards to all,
Tony Castaldo
President, US HAEA |
JOIN US !
US HAEA 2009 National Patient Conference
October 23-25 - Orlando, FL |
Space is filling
quickly - - - be sure to
register today!
In Orlando, you will have the chance to:
· celebrate the HAEA's 10th anniversary
· find out how a recently approved therapy (and other medicines currently awaiting FDA approval or being tested) can help to improve your quality of life
- attend workshops on how to get access to new products and ensure maximum reimbursement and explore financial assistance options
- get all of your HAE-related questions answered during a special Q&A session with the foremost HAE scientist/physician experts.
- enjoy time with old HAE friends and make new ones - share experiences and socialize
· visit exhibitions about and hear presentations on
new HAE therapies and...become part of the US HAEA Scientific Registry right at the hotel!
Celebration surprises, fun for the kids & more!
Check out our full agenda on our homepage! www.haea.org
* And Disney World is less than a half hour away! *
Hotel reservations can be made by calling 1-800-233-1234 and asking for the HAEA rates or going online http://orlandoairport.hyatt.com/groupbooking/orlanhnco2009
Once you have made your hotel reservations, please make sure to visit the HAE website at www.haea.org and fill out the Conference Registration form.
We are committed to provide financial assistance to HAE friends who could not otherwise afford to join us in Orlando. For more information, contact Janet Long at 508.212.9757 or janetlong@haea.org
We look forward to celebrating with all of our HAE friends in sunny Orlando!
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| The US HAEA Scientific Registry - An Amazing Beginning |
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The US Herediary Angioedema Association is proud to announce that our exciting new endeavor, the US HAEA Scientific Registry, was launched on August 12, 2009. HAEA friends responded immediately and within 48 hours, the Registry recorded nearly 75 registrants. And the number of participants continues to grow every day!
We would like to ask each and every HAE friend to sign up and provide information for our Scientific Registry.
Simply go to our webpage at www.haea.org and click on the US HAEA Scientific Registry icon in the middle of the page. You can read more about this project and fill out a registration form right online.
The Registry is squarely aimed at directing research toward a cure for HAE. Become a part of our "Patient Driven Research for a Cure" today. |
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| In This Issue |
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A Message
From Your
HAEA
President
US HAEA
National Patient
Conference-
Register
Today!
The US HAEA
Scientific
Registry -
An Amazing
Beginning !
FDA Decisions
Pending on
Other HAE
Medications
Clinical Trial
Opportunity
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| Newly Approved HAE Therapy |
 The Cinryze brand of C1 Inhibitor - a medicine that boasts a 30-year
track record of remarkable safety and effectiveness - is now FDA
approved and available to prevent attacks of HAE.
We are pleased to report that the FDA has recently approved Cinryze
for home infusion.
Please contact an HAE Association Patient Services Representative
for more information about this exciting new option for preventing HAE attacks. |
| FDA Decisions Pending on Other HAE Medicines |
 The FDA is currently reviewing CSL Behring's Berinert brand of C1
Inhibitor for treating HAE attacks. A decision will be announced
on October 10, 2009.
A December 1, 2009 decision by the FDA is also expected on
DX-88, the Dyax Corporation's medicine for treating HAE attacks.
DX-88 is administered by three subcutaneous injections and, if
approved, will be available at medical facilities. |
| Clinical Trial Opportunity |
 Jerini/Shire US is recruiting HAE patients for a clinical trial
testing its medicine (Firazyr) - a treatment for HAE attacks.
Firazyr is administered as one subcutaneous injection. HAE friends interested in participating in this trial should
contact your HAEA Patient Services Representative (see list
below). |
| Meet your HAE Advocates |
 Sally Urbaniak - Patient Services Representative
Sally is originally from the Midwest and has been a
Floridian for the past 23 years. She graduated with a
Bachelor Degree in Business Administration which
led to a successful career in Real Estate. Sally
found the HAEA while searching for better treatment
options to help herself and her daughter, who is also a patient.
Sally is a Patient Service Representative for Region 4 (see below) and works tirelessly every day with our patient community to answer questions, explore treatment options, and deal with HAE's inevitable challenges.
Her advocacy efforts have also brought her to Washington, DC where, on two separate occasions, she spoke before FDA Advisory Committees. Sally's eloquent testimony on the need for new and better HAE therapies clearly had an impact on the Advisory Committee members.
Day in and day out, Sally strives to do whatever possible to make a difference in the lives of HAE friends.
 affected by HAE. Her father died of a throat attack
when she was only 26 years old and Lois lived most of her
life in fear that she too would die at an early age.
Yet, like many HAE friends, she never gave up despite
constant attacks that significantly limited her academic
achievementes and career choices.
Lois' first big "break" in her battle with HAE occurred when she enrolled in an HAE clinical trial. Knowing that effective medicines other than anabolic steroids might
one day be available provideded Lois with her first glimmer of hope that a better
life might one day be a reality.
Lois was one of a small group of HAE friends who attended the initial HAEA organizational meetings back in 2000. She joined the HAEA staff because, "I have always wanted to reach out to as many HAE patients as possible, and not have anyone else have to feel that they are alone."
As a Patient Services Representative, Lois enjoys assisting patients in obtaining a
diagnosis, helping patients find knowledgeable physicians as well as clinical trials that offer HAE treatments. She is passionate about her work - offering individual case management and care to all of the HAE patients within her region; "One of my
greatest joys is helping my fellow patients live a more normal life and hear happiness in their voices once again!"
Lois looks forward to the day when everyone can celebrate a cure for HAE - and with the help of the HAEA Scientific Registry this is definitely a possibility! She urges everyone to visit the HAE website and sign up with the HAEA and the HAEA Scientific Registry. |
| Your Patient Services Representatives by Region |
 Region-1 Michelle Williamson (972) 814-5205
michellewilliamson@haea.org
(Region 1 includes-Arizona, Colorado, Washington DC,
Kansas, Kentucky, Maine, Nebraska, New Mexico, Nevada
and Texas)
Region-2 Lois Perry (559) 259-0572
loisperry@haea.org
(Region 2 includes-California, Iowa, Illinois, Indiana, New Hampshire, Oregon, Tennessee, Utah, Virginia and West Virginia)
Region-3 Donna Davis (808) 216-1029
donna-davis@haea.org
(Region 3 included-Alaska, Hawaii, Idaho, Minnesota, Missouri, Montana, Rhode Island, Wisconsin and Wyoming)
Region-4 Sally Urbaniak (904) 826-6700
surbaniak@haea.org
(Region 4 includes-Connecticut, Delaware, Florida, Massachusetts, New Jersey, New York, North Dakota , Ohio, Pennsylvania, Vermont and Washington)
Region-5 Jenny Barnes (252) 585-0763
jennybarnes@haea.org
(Region 5 includes-Alabama, Arkansas, Georgia, Louisiana, Maryland, Michigan, Mississippi, North Carolina, Oklahoma, South Carolina and South Dakota)
Patient Services/Clinical Programs Representative John Williamson (972) 984-0621 john@haea.org | |
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The US HAE Association publishes its newsletters to ensure everyone in our HAE family is informed about important clinical developments and all HAE Association activities. We hope you have enjoyed this issue!
The United States Hereditary Angioedema Association
Seven Waterfront Plaza
500 Ala Moana Blvd., Suite 400
Honolulu, HI 96813
Toll free phone: (866) 798-5598 |
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