Events

Mar
20
Fri
Now Virtual – 2020 Bleeding Disorder Awareness Day @ Minnesota State Capitol Rotunda
Mar 20 all-day

Dear HFMD Members & Supporters,

Due to this unprecedented outbreak of the Corona virus (COVID-19), the Hemophilia Foundation of Minnesota Dakotas and Rare Disease Action Network (RAN) have decided to convert this scheduled rally at the Minnesota state capitol into a virtual Rare Disease Awareness Day, where we ask our members to contact their elected officials via emails, phone calls, letters, & social media, instead of attending physically at the state capitol rotunda.

We ask members of Minnesota’s bleeding disorders community to reach out on March 20th to contact your state house Representatives & Senators via email, phone, & social media and ask them to support the legislative priorities listed below. We also ask you to share your personal story in a compelling and concise way to tell them how important maintaining full access to health care is to you and your families.

James Paist
Executive Director
Hemophilia Foundation of Minnesota/Dakotas (HFMD)
(651) 406-8655
We urge you to support policies to protect the bleeding disorders community.

HFMD asks all members of the Minnesota Legislature to support policies that ensure access to comprehensive insurance and access to health care services people with rare diseases need to maintain healthy lives.

2020 HFMD Legislative Priorities:

  • March 20th 2020 -NOW VIRTUAL Rare Disease Awareness Day  – ELECTRONIC COMMUNICATION ONLY
  • Pursue Out of Pocket Cap Legislation ($250 cap annually) We need bill authors
  • Outlaw & End Accumulator Adjustor Programs (intercepting co-pay assistance to patients)
  • Maintain access to:
    • Protect Current pre-existing condition policies
    • Step Therapy to Follow Clinical Practice
    • Uphold federal standards for Essential Health Benefits (EHBs)

 About Bleeding Disorders

  •  In the United States, approximately 20,000 individuals have hemophilia and of that number, approximately 600 individuals with hemophilia live in Minnesota & South Dakota..
  • The Hemophilia Foundation of Minnesota/Dakotas (HFMD) is the only resource of its kind supporting the bleeding disorders community in Minnesota & South Dakota.
  • The National Hemophilia Foundation (NHF) and the Hemophilia Federation of America (HFA) are advocacy organizations on a national scale with affiliated state chapters across the country including the HFMD.

Understanding Bleeding Disorders

  • Hemophilia, von Willebrand disease and other rare bleeding disorders are genetic conditions that impair the body’s ability to clot properly. People living with hemophilia and von Willebrand disease, often the most severe of these conditions, administer prescription medication (clotting factor or other new therapies) to avoid painful or potentially life-threatening bleeding episodes that can lead to advanced medical issues such as joint and muscle damage and even death.
  • The impact of a major bleed or of cumulative damage from repeated bleeding episodes, is too severe and it is imperative that individuals with hemophilia continue to take their life-saving medicine, even though it is costly, to prevent future injuries or future joint damage.
  • Clotting factors vary in a number of important respects, including half-life and immunogenicity, and as such are not therapeutically equivalent or interchangeable. No generic clotting factor exists. Patient bleeding patterns and responses to different clotting factors vary widely.
  • Recognizing this diversity of clotting factor products, the Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation has stated that product selection for bleeding disorder patients “require[s] a complex decision making process” between a patient and his or her physician: “it is critical that the bleeding disorders community has access to a diverse range of therapies and that prescriptions for specific clotting factor concentrates are respected and reimbursed.”
  • Because the selection of the medically-optimal product for each patient is so individualized and so important, MASAC urges payers to cover whichever factor product is prescribed by the patient’s treat physician rather than resorting to a PDL, formulary approach or step therapy.
May
5
Tue
Webinar: Ask the Provider
May 5 @ 6:00 pm – 7:00 pm

Register for the webinar here by May 4th!

The provider panel will feature: Dr. Sue Kearney of Childrens MN, Dr. Mark Reding of M Health Fairview, Kim Baumann, PT of M Health Fairview, and others!

ask-the-provider_5-5-20

Registrants that sign in and participate will be placed into a drawing for a $25 Dairy Queen gift certificate!

 

Jun
25
Thu
Online Escape Room Challenge! @ From the comfort of your own home!
Jun 25 @ 7:00 pm – 8:00 pm

escape-room-invite

Hurry! Space is limited!
To register yourself and/or your family click the Event Website link above.

Jul
12
Sun
Summer Camp CANCELLED
Jul 12 – Jul 17 all-day

Dear Camper Parents/Guardian,

We first want to thank you for your patience in awaiting a decision on the status of HFMD’s 2020 summer camp. After exhausting all internal efforts between HFMD and our partner host True Friends to keep a plan for camp in place for 2020, it was determined on May 15th that all of True Friends’ summer camps, including Camp Courage North Bleeding Disorders Camp, have been cancelled due to the ongoing risks associated with the COVID-19 virus.

We understand that this announcement is disappointing. However, we are working diligently with our affiliated Hemophilia Treatment Centers to create safe, alternative programming that will help continue to connect campers with their friends from camp. Once programs are finalized, details on how to register will be put out by HFMD.

Please refer to HFMD or your HTC for updates regarding alternative opportunities for this summer.

We are hopeful our traditional summer camp will proceed once again in 2021. Feel free to contact me with any questions.

Sincerely,

James Paist
Executive Director

Jul
13
Mon
Kids Summer Program
Jul 13 – Jul 17 all-day

For more information and to register your child/children for this event, please click the Event Website link above.

summer-program-invite

Jul
25
Sat
SD Family Education Day @ GreatLIFE Suburban Lanes Family Fun Center
Jul 25 all-day

Map of Event Location

We’re now taking registrations for this event.

See the following link if you’d like to complete your registration online: SD Invitation with Registration Link, or download the attachments with the invitation to submit your registration via US mail, email or fax.

You can also click this link SD Registration Forms to Download to access the downloadable forms directly.

Aug
16
Sun
Step Out for Bleeding Disorders Walk Fundraiser Goes Virtual for 2020!
Aug 16 – Aug 31 all-day

 

 

We’re still taking donations for the 2020 Step Out for Bleeding Disorders fundraising walk! Thanks everyone for your support to date!

Click here to donate to our walk

Aug
20
Thu
Virtual Event: Gene Therapy Research: What You Need to Know
Aug 20 @ 6:00 pm – 7:00 pm

You’re invited to a patient-focused virtual event about the science behind gene therapy research.

For more information and to register click HERE.

Oct
15
Thu
Family Education Zoom Session @ Zoom
Oct 15 @ 6:00 pm – 7:00 pm
Oct
17
Sat
Final Session of Inspiring Shots Golf Clinic with Perry Parker @ Columbia Driving Range & Learning Center
Oct 17 @ 11:00 am – 1:00 pm

If you wish to attend and/or you have questions, please email info@hfmd.org