Dedicated to improving the quality of life of persons with bleeding disorders and their families
Call Us: 860-495-0006
Are you a woman with a bleeding disorder? FIX, FX, FXIII? Comprehensive Health Education Services still has a few spots left for the LadyBugs National Women's Summit November 3-5, at the Marriott City Center, Newport News. Transportation and hotel expenses are covered. Check it out at www.comphealthed.com/ladybugs/
Say what? It's a benefit, it's fun, it's community. All rolled (pun intended) into one.
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.
We are sad to say we've had to postpone this Saturday's Infusion Class.
Please keep an eye out for the next one!
September 9th, 2017.
9 AM -1 PM
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.
Shai, 15 year old from Massachusetts with severe hemophilia, recently flew down to Washington, DC to advocate on behalf of the bleeding disorders community during a Hemophilia Federation of America event. Shai filmed and documented his trip and then produced this video of his experience.
Shai demonstrates the importance of advocacy and that you are never too young to make your voice heard.
Thanks NEHA for posting this. Thank YOU Shai for advocating for us! https://www.youtube.com/embed/SwwfOyTvXKw
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.
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.