News from the United States of America

From Ianice Viel, Patient Advocate and Social Media Manager

It’s with tremendous gratitude that we wrap up an exciting year at the US HAEA filled with activities that brought us closer as a HAE family while continuing to push the boundaries on HAE discoveries, treatment, and care. We are now more committed than ever to help every HAE patient lead a life that is unhindered by HAE. We have made great strides in the past 20 years, but vitally important work remains. Going forward we must protect access to HAE therapies, while pushing for research that brings even better medicines to our children and future generations.

It has been a very busy and productive year for our community. We are grateful for the many US HAEA members who participated in our events and helped us spread HAE awareness! We wrapped up 2019 with:

  • Eleven HAEA Meet & Greets, seven HAE INMOTION® events, seven patient-driven fundraising programs, and two unique awareness events.
  • A record-breaking over 1,000 participants at the 2019 HAEA National Patient Summit.

Together, we continue in the quest for better and more effective HAE treatments and supporting groundbreaking research that leads to answers to the remaining scientific mysteries of HAE. We are also happy to announce that the Pam King HAEA Scholarship Fund provided financial aid to help 74 college students achieve their lifelong educational goals and life aspirations.

As we approach 2020, we are preparing to participate in the 5th HAE Global Conference which promises to be the best yet. At the US HAEA, we also plan to expand our core services with a particular focus on adequate access to and reimbursement for HAE therapies. US HAEA friends will continue to enjoy our patientcentric programs and activities geared toward our longstanding goal – improving the quality of life for everyone in the HAEA community.

We look forward to being part of your happy and healthy 2020!

2020-01-03T13:17:25+02:00December 30, 2019|United States of America|