The Coalition for Hemophilia B is holding 9 meetings for their Factor 9 families nationwide over January, February, and March. Meetings are FREE for families living with hemophilia B. Each meeting will be tailored to families in certain states/regions of the country.
You must register by the deadline to receive the Zoom link and agenda. Each meeting will last a half day.
Register by the early deadline and we will ship a box of supplies to your home to enhance the meeting experience!
Please Register HERE
Please Note: This virtual event is for families living with Hemophilia B only.
Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19
11:30 a.m. – 12 p.m.
Patient Advocacy Groups and Event Sponsors Exhibit
“Successes and Shortcomings of Telehealth for Rare Diseases from the Clinician Point of View” with Susan Berry, MD, Professor, Department of Pediatrics, University of Minnesota Medical School
“Policy, Patients, and Telehealth’s Post-Pandemic Potential” with Bobby Patrick, Vice President of Strategic Growth and Policy, Medical Alley Association
“Telehealth: Implications for Care, Policy, and Research” moderated by Paul Orchard, MD, Professor, Department of Pediatrics, University of Minnesota Medical School
NHF’s Washington Days is an opportunity for people affected by bleeding disorders to advocate for issues that are important to them. In 2020, Washington Days had more than 450 volunteer advocates from 45 states that met with legislators and staff to discuss federal funding for bleeding disorder programs and access to skilled nursing facilities (SNFs). The issues and priorities for 2021 Washington Days will be announced later this year.
Please note that Washington Days 2021 will be a virtual experience. Washington Days programming will take place during the dates of March 1-5. More programming details will be announced soon.
Due to the impact of COVID-19, this year our 21st Annual “Hearts of Hope Gala” is going VIRTUAL.
Join us from the comfort of your home, or wherever you choose to be, for a night of fun to raise funds for the Hemophilia Foundation of Minnesota and the Dakotas (HFMD) via a virtual gala. During this program, you will be able to bid on amazing items through our online auction and bidding and have a chance to win prizes by participating in our online raffle!