Photos

Click the Pictures and the “View on Facebook” links below to see more pictures!

Say what? It's a benefit, it's fun, it's community. All rolled (pun intended) into one.

Casino Night for NEHA

Casino Night for NEHAOctober 5, 2017, 6:00pmUMass ClubYou are invited to attend a Casino Night on Thursday, October 5 at 6 PM on the top floor of the @[112457788773241:274:UMass Club] University of Massachusetts Club to support the New England Hemophilia Association (NEHA)! There will be friendly casino table gambling, live DJ, epic cocktails, passed foods, and majestic views of the city in a private club atmosphere.

All proceeds from the event go to benefit NEHA's programs and services. A special thanks to Jon Taylor, financial advisor for Merrill Lynch, for putting this event together, which is 100% supported by local startup companies and entrepreneurs like: @[918424801553362:274:botkeeper], @[154177971351947:274:Pretty Instant Photography], @[193048370756619:274:Hive and Colony], @[753397988077500:274:Volnay Capital], @[104058703016613:274:Coredna], @[122451884441968:274:Luxury Residential Group], and @[1539360996336015:274:iRewardHealth]!

Ticket prices are $100.
Parking at the UMass Club is only $8

Buy a ticket here: casinonightbenefit.splashthat.com

Top Chip Winner gets a FREE custom suit from Hive & Colony and there are chances to win other prizes!
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Casino Night for NEHA

The Connecticut Hemophilia Society (CHS), the Hemophilia Alliance of Maine (HAM), and the New England Hemophilia Association (NEHA), work to ensure that people affected by bleeding disorders and their families living in New England remain informed about important medical information that affects the community.

On Sept. 7, 2017, Alnylam Pharmaceuticals announced that it recently became aware of a fatal serious adverse event (SAE) that occurred in a patient with hemophilia A who was receiving fitusiran in the Phase 2 OLE study (clinical drug trial). As a result, Alnylam suspended dosing in all ongoing fitusiran studies pending further review of the safety event, and development of a risk mitigation strategy. You can read a full press release here. Additionally, through conversations with Alynylam, we've been made aware that the SAE was an embolism (blood clot) in the brain. It is not yet known if this event is directly related to the patient’s treatment with fitusiran.

It is important to note that this product is not a 'gene therapy' medication, but rather modifies the expression of people's healthy antithrombin, which causes thrombin to be increased by a subcutaneous (subQ) injection.

Times like these call our attention to the need and importance for community wide advocacy. We must be strong advocates for ourselves, and our communities. We rely heavily on our therapy partners for future medical advancements and commend Alnylam on their transparency during this process. We take this moment to call upon our care providers and ask them to be diligent in their understanding and administration of drug trials as we all continue together towards a cure.

If you have questions about this situation, please contact your Hemophilia Treatment Center (HTC), or your primary health care provider. Alnylam also has a hotline for patients to ask questions at: 1-866-330-0326. CHS, HAM, and NEHA will continue to monitor this case and will provide updates as they become available.

Read the National Hemophilia Foundation’s (NHF) statement here.
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We are sad to say we've had to postpone this Saturday's Infusion Class.
Please keep an eye out for the next one!
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We are sad to say weve had to postpone this Saturdays Infusion Class. 
Please keep an eye out for the next one!

2 weeks ago

Connecticut Hemophilia Society

Oh hey! Did you buy your cruise raffle tickets yet? ... See MoreSee Less

Oh hey! Did you buy your cruise raffle tickets yet?

Saturday September 9th 2017
Infusion class.
Southbury CT.
9AM -1PM
Be there or be square.
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There's still time to register! ... See MoreSee Less

Theres still time to register!

Please note the name of the organization and the date of the award. As time goes on there will be more bits of information regarding CHF. It's important to know our past as we move to our future. ... See MoreSee Less

Please note the name of the organization and the date of the award. As time goes on there will be more bits of information regarding CHF. Its important to know our past as we move to our future.

1 month ago

Connecticut Hemophilia Society

He got his own space in Chicago. ... See MoreSee Less

He got his own space in Chicago.

Did you sign up for the infusion class yet? That port will come out someday, why wait to learn? ... See MoreSee Less

Did you sign up for the infusion class yet? That port will come out someday, why wait to learn?

September 9th, 2017.
Infusion class.
9 AM -1 PM
Southbury CT.
Be there or be square.
(Does anyone even know what that means any more?)
Just go, maybe someone there needs YOU to show THEM how you do it.
Plus there's free food.
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1 month ago

Connecticut Hemophilia Society

They're here! Two $1000 gift cards and your cruise guide!

Raffle tickets available on our website or from any board member. We'll also have them at events.
Drawing at the Annual Meeting in December. You do not need to be present to win.
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Nurse and needles and sticks, OH MY!
Is your child close to learning self infusion but just needs a little encouragement?
Are you ready for home infusions and the independence it brings but need that one successful stick?
Bring a friend or a spouse and learn how to infuse. Infusion classes are an informal and fun way to help ease the stress of learning to self or home infuse. Several of our community have already learned to self infuse this way.
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Nurse and needles and sticks, OH MY! 
Is your child close to learning self infusion but just needs a little encouragement?
Are you ready for home infusions and the independence it brings but need that one successful stick?
Bring a friend or a spouse and learn how to infuse. Infusion classes are an informal and fun way to help ease the stress of learning to self or home infuse. Several of our community have already learned to self infuse this way.

2 months ago

Connecticut Hemophilia Society

Infusion ClassSeptember 9, 2017, 9:00amConnecticut Hemophilia SocietyThe Connecticut Hemophilia Society invites you to join us for a day of infusion training.
When: September 9th from 9 AM to 1:00 PM
Where: Southbury Crowne Plaza Hotel
While community members come together for a day of learning how to infuse and self-infuse, we will be joined by nursing staff and mentors to provide a stress-free opportunity for anyone interested in learning the ways to gain the independence of home and self infusion.
There are families from Connecticut and western New York who come to learn and many of our already proficient older members help with the training.
After a day of working together we have an awards ceremony and lunch for those who have participated.
We have had great success with our classes and some of our previous students have grown to become mentors.
For information, directions or to RSVP by September 1st please call 860.495.0006, register on our website cthemophilia.org or email us at info@cthemophilia.org.
We look forward to seeing you on September 9th!
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Infusion Class

2 months ago

Connecticut Hemophilia Society

Thanks to everyone that came out for Strike Out Hemophilia today! Great food, great company, even Buddy stopped by for a visit at the beautiful Dunkin Donuts park in Hartford. ... See MoreSee Less

Thanks to everyone that came out for Strike Out Hemophilia today! Great food, great company, even Buddy stopped by for a visit at the beautiful Dunkin Donuts park in Hartford.

Comment on Facebook

Sorry I didn't stop by did not have a break to night at the ball park would like to talk to some one about joining.

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Alpine Walk 2016
CHS Alpine Walk 2016

2015 Holiday Party

Infusion Training 2015

FB Album

Dads In Action
Snowshoe 15
2014 Annual Meeting
 

What a great time at our Annual Meeting/Holiday Party. Thank you all for coming!

Posted by Connecticut Hemophilia Society on Sunday, December 14, 2014
March 19, 2014

Check out some of the pictures from this past weekend!!!

Posted by Connecticut Hemophilia Society on Wednesday, March 19, 2014
2013 Annual Meeting
9th Annual Katzman Family Snowshoe Walk

9th Annual Katzman Family Snowshoe Walk

Posted by Connecticut Hemophilia Society on Tuesday, March 19, 2013
Snowshoe 2013