March is Officially “Bleeding Awareness Disorders Month” in Rhode Island

The New England Hemophilia Association (NEHA) today announced that Representative Chris Blazejewski (D-Providence) will be introducing a resolution to declare March “Bleeding Awareness Disorders Month” in Rhode Island at a ceremony on March 1^st in the House of Representatives.

Hemophilia and other inheritable bleeding disorders impact over 3 million Americans; an estimated 1,100 individuals in Rhode Island. These diseases prevent the body’s ability to form a proper blood clot when needed and can lead to extended bleeding and even death of not treated effectively.

“We are grateful to Representative Blazejewski for taking the opportunity to raise awareness and educate the public about bleeding disorders,” said Rich Pezzillo, Executive Director of the New England Hemophilia Association.   “We hope this renewed awareness will spur people outside of our communities to get engaged and help us further the discussion around the challenges hemophilia patients face, including concerns about accessing the proper medication and treatments that can literally save people’s lives.”

There is no cure for hemophilia and treatment options are typically limited to a single intravenous medication that averages about $250,000 annually per patient. NEHA is working with other patient advocacy organizations in supporting legislation in Rhode Island and across the region that reduce barriers in accessing critical medications, including legislation that limits the amount of money insurers can force patients to pay for their prescriptions.

On the heels of the resolution being introduced, the Hemophilia Federation of America (HFA) will be holding their national Symposium in downtown Providence with an expected 1,500 attendees from around the country. This is the first time HFA has held a conference anywhere in New England! On Saturday, April 8, the first WaterFire of the season will be lit to recognize the national bleeding disorders community.

WHAT: Bleeding Awareness Disorders Awareness Month Resolution

WHEN: Wednesday, March 1, 2017 4pm

WHERE: House Chamber of the Rhode Island General Assembly

WHO:  Representative Chris Blazejewski (D-Providence)

             Rhode Island bleeding disorders patients

 Representatives from the Hemophilia Treatment Center at Rhode Island Hospital

Patients living with hemophilia and other bleeding disorders are available for interview upon request.

 

About the New England Hemophilia Association

 

Since 1957, the New England Hemophilia Association (NEHA) is a regional non-profit organization located in Dedham, MA. NEHA has been improving the quality of life for residents throughout New England with inherited bleeding disorders through education, advocacy, peer support, and resources.