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A Message from the Executive Vice President
Dear HAE Friends,
Summer is usually a time when life slows down a bit – long hot days lure us to the beach or just a cool glass of iced tea on the stoop. But even the lazy days of summer are not able to distract your HAEA from our mission, Helping HAE patients and their families to achieve lifelong health.
When our President, Tony Castaldo, appeared before the Senate Subcommittee on Appropriations on Capitol Hill last month, he had that very mission in mind. Tony advocated for patients with ALL kinds of chronic hereditary swelling conditions, asking for continued funding for research to answer any lingering scientific questions. If you have not seen it already, check out www.haea.org for the video of Tony’s appearance before one of the most influential committees in US government.
Be sure to read about the new HAEA emergency answering service. Certainly, we hope you will never need to use it, but the new toll-free number will put you in touch with the HAEA Patient Services Team member on-call 24/7, if you have an HAE emergency.
Have you seen the new patient program online? "HAE Essentials – A Patient’s Guide" is an easy video guide to all of your HAE questions - read more below. We encourage everyone to share this guide with family, friends and even co-workers who are interested in learning more about HAE.
What an amazing success HAE DAY was! Hard to believe it was only a dream just a little more than a year ago. Read below about the many events you and your families put together to mark the day, including creative fundraisers, and about the very first global HAE conference in Copenhagen, Denmark. We hope you will be inspired to start planning your own unique way to raise HAE awareness and spread HAE education on May 16, 2013!
As always, the HAEA Scientific Registry Report closes out this issue – new, easier and quicker online questionnaires are just around the corner. We appreciate everyone’s patience as we work to make your SR experience the very best possible… because, as you know, everyone who participates brings us closer to a cure!
Last but certainly not least, if you have not already, please sign up for the DC Eastern Regional patient meeting or the Dallas Southern Regional patient meeting… or both! There is no better place to meet hundreds of other patients and fellow caregivers while learning about HAE and all of the opportunities we can embrace today! Leading HAE physicians will be there to discuss your personal case. Register today. It’s free! See you there….
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Janet Long
Exec. Vice President, USHAEA
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In This Issue
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A Message from the Executive Vice President
US HAEA Regional Patient Meetings in Washington, DC and Dallas, TX -
Register Today!
Capitol Hill News-
Congressional Testimony on Your Behalf
HAE Day – May 16, 2012 -
A Global Success!
New HAE Medical Emergency Assistance Phone Number!
New Patient Video Education Program
The US HAEA Scientific Registry Report
Your US HAEA Patient Services Team Members
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HAEA Regional Patient Meetings in Washington, DC and Dallas, TX this Fall!
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The June 2 patient meeting in Chicago was a great success! Patients and family members enjoyed time to socialize, learn the latest on HAE, and speak personally with HAE physician experts. 
The HAEA invites you to the 2 remaining regional patient meetings:
Eastern Regional –
September 29 in the Washington, DC metro area
Southern Regional –
October 27 in the Dallas metro area.
You can register now for the Sept 29 meeting – just click here.
Everyone is invited, no matter where you live in the US! Register TODAY !
September 29 – Washington, DC
Fairview Park Marriott
3111 Fairview Park Drive
Falls Church, VA 22042
Registration for the October 27 meeting will open soon!
Watch for more meeting information coming by email and…
We look forward to seeing you in Falls Church!
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Capitol Hill News – Testimony on Your Behalf
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We are proud to let you know that HAEA President Anthony J. Castaldo appeared before
the US Senate Appropriations Subcommittee on Wednesday, June 6.
 We are delighted that the HAEA’s decade-long public policy advocacy efforts resulted in HAE being featured in such an influential forum. Tony’s testimony stressed the urgent need for research into the causes of all types of HAE and asked that HAE be included on a very small list of conditions that are eligible for medical research money controlled by the Department of Defense.
As you can see on the video of Tony’s testimony (on our website, www.haea.org), Senate Appropriations Committee Chairman Daniel Inouye lent a very interested ear and promised serious consideration of continued funding in 2013.
The HAEA continues to advocate for research that will change the lives of HAE patients and their families, be it on Capitol Hill or wherever the HAE message needs to be heard.
Once again, the video of Tony’s testimony can be viewed at www.haea.org.
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HAE Day – May 16, 2012 A Global Success!
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May 16, 2012 was the very first hae day :-) – a annual global event to raise awareness of Hereditary Angioedema among the general public and the medical community.
The US HAEA supported hae day :-) activities in the US to increase awareness of HAE and to raise funds for the HAEA to continue our vital work supporting HAE patients. We are already looking forward to hae day :-) 2013!
When HAEA began the planning for an annual global day for HAE awareness and education, we believed that it would be the members of the US HAEA, as the largest HAE patient organization in the world, who would lead the way. And you proved that to be true!
The US had the most visits to the HAE Day web site (www.haeday.org) – raising awareness and adding smiles around the globe! – and the largest number of events, both fundraisers and educational programs. You, our HAE community, pitched in for more than 17 separate HAE Day activities!
 The first global HAE Day Conference in Copenhagen, Denmark, also succeeded all it set out to accomplish. Nearly 400 attended the two-track presentations, one for patients and one for physicians. Representatives from 37 patient groups from around the world were there and talked about their continued struggles for access to HAE medicines. World-class HAE physicians presented the latest HAE research and hope for the future!
As we look to May 16 , 2013, it is never too early to start planning your own HAE Day educational event or fundraiser! You can read about and be inspired by this year’s events at http://www.haea.org/hae-day/
Let’s lead the way again in 2013!
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New Emergency Assistance Phone Number – please note!
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 In order to serve our HAEA community better, a centralized phone system has been put in place to asssist you in an HAE medical emergency. We have listed the toll-free number on our web site for your convenience, but hope everyone will take just a moment to note the number now - 800- 549-3547.
Please remember this number is for HAE medical emergencies only.
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New Patient Video Education Program
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Don’t forget to tell your family and friends to visit our new, updated patient program – HAE Essentials- A Patient Guide ! The Patient Guide is presented in an e-zine format with printable materials related to the video content. The video series is a great tool for HAE education and awareness.
You can copy this URL and send to others and click on it to view the videos yourself!
http://haeedu.com/hae_essentials/issue1/index.html
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The US HAEA Scientific Registry Report
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The HAEA Scientific Registry Report
…providing you with updates about our Scientific Registry (SR)
and the new HAE research it supports.
Not yet a member of the Registry? We hope this section will inspire you to join!
Already a participant? We hope this section will inspire you to continue the work
to bring us closer to a cure!
New Online Questionnaires!
You may have already heard that new, more user-friendly online questionnaires are in development… These collect the same data as your original questionnaires, but in a MUCH easier and quicker way. Stay tuned for word soon from Sharon and Susan, the SR administrators, that the new questionnaires have launched!
 SR Facts
Number of Scientific Registry participants today – 948
Let’s break 950 this month!
Number of Scientific Registry participants wanted – 2000+
Sign up today to get us there!
You can join the Scientific Registry at any one of our 2012 Regional Patient Meetings or simply by clicking here.
Your SR administrators are Sharon Grina and Susan Finley
- call 866-798-5598
to reach them with any questions you may have …
The US HAEA Scientific Registry – Patient Driven Research for a Cure!
You can make a difference!
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Your Patient Services Representatives by Region
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Your
US HAEA
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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
500 Ala Moana Blvd., Suite 400
Toll free phone: (866) 798-5598
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Research, Advocacy, Compassion, Empowerment
