NEHA hosts a number of advocacy events each year. Also, there are a number of opportunities for NEHA members to be part of our advocacy initiatives that are ongoing. Below is a list of events and advocacy opportunities with descriptions.

Ask Your Congressional Reps To Join Rare Disease Caucus

Ongoing

A Rare Diseases Caucus has been formed in the U.S. House of Representatives to provide a forum for discussion of important topics related to rare diseases and build support for legislation to improve the lives of patients and their families. Check the list and, if your Representative isn’t yet a member, please ask him or her to join the Caucus.

New England Connect with State Legislators

Ongoing

Beginning in April 2011, NEHA's members in Connecticut, Maine, New Hampshire, Rhode Island, and Vermont have an opportunity to meet face-to-face with their state lawmakers in their hometown or at their State House. Meetings will allow NEHA members to education lawmakers on the issues facing the bleeding disorders community. If you would like to participate, please contact Wendy Owens, NEHA's Advocacy Coordinator via email or at 781-326-7645.

Storyboarding for President Obama

Ongoing

This is an ongoing event during which members of the New England bleeding disorders community have the opportunity to tell President Obama about how the Affordable Care Act has/will impact them. Written submissions should include: name, address, who you, what is your condition, and how the Affordable Care Act has/will impact you. Submissions will be shared directly with the President's office. For more information or to submit a story, please contact NEHA's Advocacy Coordinator, Wendy Owens, via email or at 781-326-7645.

Advocacy in Action newsletter

To learn more about what is happening in your state and around the nation on issues important to the New England bleeding disorders community, please see our bi-monthly Advocacy in Action newsletter.

Personal Advocacy Webinar

NEHA members participated in NEHA's first Personal Health Care Advocacy Webinar presented online on April 13, 2011. They learned about personal health care advocacy from the comfort of their home. Topics discussed included, but were not limited to: dealing with insurance companies, advocating for you and your family's needs to healthcare providers, making informed health care decisions, and how to educate yourself about your chronic health condition so you can be a more effective self-advocate. Participants accessed the webinar via their computer. If you are interested in watching the Personal Advocacy Webinar, please contact NEHA’s Advocacy Coordinator, Wendy Owens,  or 781-326-7645, for the link to the presentation.

Public Hearing on Hemophilia Advisory Committee Bill, MA

May 10, 2011, 10 AM-1PM at Massachusetts State House, Boston

In January, as lead sponsor Representative Jeffrey Sanchez filed a revised version of the Hemophilia Advisory Committee bill, HB1526.  A public hearing on the Hemophilia Advisory Committee bill was held on May 10 at the Massachusetts State House. NEHA members testified at the hearing. You can read their testimony by choosing from the list below.

Impact of National Health Care Reform on the New England Bleeding Disorders Community Webinar

May 17, 2011, 7-8 PM

NEHA offered a webinar on the impact of national health care reform on the bleeding disorders community. This webinar took place on May 17 from 7 to 8 PM.  The presentation answered the who,  what, and when of  national health care reform and why it is so significant to NEHA members. If you are interested in watching the webinar, please contact NEHA’s Advocacy Coordinator, Wendy Owens,  or 781-326-7645, for the link to the presentation.

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