Programs & Conferences

The purpose of Industry Forum is to present information on new and pipeline products that treat rare bleeding disorders. Often the presentations given directly by pharmaceutical companies may include investigational therapies such as gene therapy. HFSC’s Medical Advisor is always present at this conference to answer any medical questions including those regarding clinical trials. It is important to stay informed about new therapies that arise. 

Legislative and self-advocacy are critical components to the entire rare disease community. HFSC presents current legislative issues facing our community and provides opportunities to address them. Also discussed are self-advocacy issues crucial to our well-being.

Women’s bleeding issues continue to present specific challenges with diagnosis, treatment and access.  Heavy menstrual bleeding can lead to anemia (low red blood cell count/low blood iron levels), with symptoms of fatigue, paleness, lack of energy and shortness of breath. Many women with bleeding disorders are also caregivers of a child with a bleeding disorder and self-care can be challenging. This retreat presents an opportunity to carve out time for yourself, laugh with your blood sisters and learn how to advocate for your own treatment.

“Light It Up Red!” Join HFSC and other foundations from around the world to bring awareness to the global plight of people with rare bleeding disorders. HFSC will light up a local monument red and share this photo with others from around the globe on the World Federation of Hemophilia’s website: www.worldhemophiliaday.org. In fact, thousands of people worldwide are united and show their support by lighting up over 70 major landmarks in cities across the world. 

HFSC’s annual event where the community comes together to learn about updates and strategic goals of the foundation and exciting issues that span medical, psychological, and physical well-being. Come and welcome new community members and see old friends. HFSC also presents its annual awards and recognizes its prolific scholarship winners.

HFSC invites families living with a rare bleeding disorder to enjoy a weekend in the mountains for family camp with a different theme each year. Sample activities for kids and parents include a campfire, swimming, arts and crafts, ropes course, archery, and talent show. Teen and parent activities also are offered throughout the weekend. This special weekend (which includes parents and siblings) offers much-needed respite, recreation, and family time while also allowing children attending summer camp to get to know each other before leaving for camp. On-site medical support is provided in addition to a self-infusion class. Families are provided with their own cabin; however, sleeping bags, and toiletries are not provided. In addition to fun activities, family camp offers attendees the chance to form friendships with families facing similar challenges.

In partnership with and hosted by The Painted Turtle, our summer camp provides a safe and exciting camp experience for children ages 7-16 with a rare genetic blood disorder. Teens aged 17-18 are also welcome to attend camp as Leaders in Training (LIT). In each session, between morning horseback rides and evening campfires, children become artists, swimmers, athletes, canoe paddlers, stargazers, actors on stage, adventurers, and, most importantly, friends. Our campers form a unique community, living in cabins alongside other kids coping with similar medical conditions. With the support of both counselors and cabin mates, kids discover they are capable of doing things they never dreamed possible. Our campers experience a magical transformation, as they sing and dance, paint, play, and develop important friendships.

Life outside of camp may mean a series of medical procedures and hospital stays, but camp is an opportunity for kids to just be kids. With the support of peers, counselors, and on-site medical staff, campers are free to be themselves. For more information and to apply: www.thepaintedturtle.org

At the end of the year, it is time to celebrate our community with our annual Snowflake Community Dinners! Children receive gift cards and HFSC families enjoy a meal, holiday crafts, and a White Elephant gift exchange. Register early as these dinners always sell out.