On Wednesday, May 24th, HFA will host our 4th annual Community Fly-In in Washington, DC, to communicate our concerns to Senators who are now considering the legislation. While your fellow community members are on Capitol Hill, we are asking those who cannot join us in person to participate in our annual Virtual Hill Day. Please take the time to call your lawmakers and reinforce the message we are delivering on the Hill. To generate the greatest impact, we need community members nationwide to be involved. We need YOU, as leaders in your state, to engage your local community and help us spread the word! Here are some ways you can help:


·         Send your own Call to Action Email or forward HFA’s Virtual Hill Day Email on May 23rd to your community members. We want to make this simple for you! Stay tuned for content that you can share with your members. Content will also be available through the member portal.


·         Make an announcement at an event in May asking the community to participate.


·         Post to social media about how you can support federal legislation at the local level.


·         Share HFA’s Facebook posts and Tweets on May 24th (we’ll be posting throughout the week and the day-of!).


·         Schedule meetings with the district offices of federal legislators in your state and invite people to attend. Find district offices and contact information using HFA’s Take Action Center.


In the coming days, HFA will provide you with the talking points being used in DC to support your efforts meeting at local offices. You don’t have to go to DC to make your voice heard with your federal legislators!

Thanks,
Hemophilia Association of NY
131 West 33rd Street, #11D, New York, NY 10001
Phone: 212-682-5510   Fax: 212-983-1114
www.hemophiliany.com
www.facebook.com/Hemophilia.Association.of.NewYork

 

Help support Hemophilia Association of New York with online shopping purchasing from Tobi.com. Tobi will donate 1% of your purchase when you shop using our customized link and select Hemophilia Association of New York as the charity of your choice.

 

 

 

 

 

 

Genentech Alliance and Advocacy Relations, Hemophilia

Genentech, a member of the Roche Group, announced positive interim results from the phase III HAVEN 2 study evaluating

emicizumab prophylaxis in children less than 12 years of age with hemophilia A and inhibitors to factor VIII.

-Emicizumab
prophylaxis reduced the number of bleeds in children with hemophilia A and inhibitors to factor VIII. These results build upon data reported from the phase III HAVEN 1 study.

The press release is attached below:

Genentech, a member of the Roche Group, this evening announced positive interim results from the phase III HAVEN 2 study evaluating emicizumab prophylaxis in children less than 12 years of age with hemophilia A and inhibitors to factor VIII.

- Emicizumab prophylaxis reduced the number of bleeds in children with hemophilia A and inhibitors to factor VIII.
- These results build upon data reported from the phase III HAVEN 1 study.

The press release is attached below:

 

 

Emicizumab prophylaxis Press Release

 
 

"Patient Puppet"

We donated "Patient Puppets" to the Hemophilia Treatment Center in Long Island Jewish Medical Center. The patient puppet, has a port, a PIC line, a bruise site, and a Hemophiliac knee joint, to educate and demonstrate to kids about Hemophilia.

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