Events

Dec
3
Thu
HFMD & BioMarin HemDifferently Virtual Event @ Zoom
Dec 3 @ 6:00 pm – 7:00 pm

For more information and to register, please click HERE.

Jan
14
Thu
HFMD & BDAND HFA Hemophilia Jeopardy Zoom Event @ Zoom
Jan 14 @ 6:00 pm – 7:00 pm

Please Click HERE to Register!

Jan
30
Sat
Virtual Family Event by The Coalition for Hemophilia B – For Hemophilia B Patients Only @ Virtual
Jan 30 @ 2:00 pm – 7:00 pm

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. 

Feb
26
Fri
Rare Disease Day
Feb 26 @ 11:30 am – 2:00 pm

Telehealth in Rare Disease Clinical Practice and Research: The Silver Lining Now and Beyond COVID-19
Friday, February 26 2021
Virtual
Please Register HERE
The theme of this year’s program will be telehealth. Possible panel topics include, but are not limited to: provider and patient experiences, policy and legal implications, and how clinical trials will need to adapt.

Event Agenda

11:30 a.m. – 12 p.m.
Patient Advocacy Groups and Event Sponsors Exhibit

12:00-2:30 p.m.
Formal Program

Formal Program

Keynotes

“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

Panel Discussion

“Telehealth: Implications for Care, Policy, and Research” moderated by Paul Orchard, MD, Professor, Department of Pediatrics, University of Minnesota Medical School

Mar
1
Mon
2021 Washington Days @ Virtual
Mar 1 @ 12:00 am – Mar 5 @ 11:45 pm

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.

 

 

Learn More and Register HERE

Mar
9
Tue
BDAND & HFMD Taco Tuesday Sponsored by Octapharma
Mar 9 @ 6:00 pm – 7:00 pm

Please click HERE to register!

Apr
9
Fri
2021 Annual Members Meeting @ Virtual Zoom Event
Apr 9 – Apr 10 all-day

For more information and to Register, please click HERE.

May
1
Sat
2021 Hearts of Hope Virtual Gala @ Virtual
May 1 @ 7:00 pm

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! 

REGISTER HERE ADMISSION IS FREE

Jun
27
Sun
Summer Camp @ True Friends Camp Courage South
Jun 27 @ 4:00 pm – Jul 2 @ 2:00 pm

Please Click HERE for 2021’s HFMD Summer Camp Application. 

Jul
31
Sat
HFMD South Dakota Family/Education Day @ Thunder Road of Sioux Falls
Jul 31 all-day

More Information & Registration Site Coming Soon!