Additional Resources: Programs and Workshops
Project SHARE
Save One Life
saveonelife.net
Humanitarian program donates factor to developing countries. Recipients are patients, doctors, clinics, hospitals in countries where factor is scarce or unavailable. Since 2002, SHARE has donated more than $200 million worth of factor to over 75 developing countries.
Hope for Hemophilia
hopeforhemophilia.org
National nonprofit that assists patients with bleeding disorders when they face financial hardships, emotional challenges. Founded by Jonathan James, a man with hemophilia, the organization has given over $1 million in assistance since 2009.
Inhibitor Family Camp
Comprehensive Health Education Services (CHES)
ches.education/after-the-shock
Camp addresses the unique needs of children with active inhibitors, and their families. Full weekend of education, support, fun. Held twice a year; camper costs covered.
Danny’s Dose
dannysdose.com
Organization advocating for the change of emergency medical protocols for chronic illness and rare disease.
North American Camping Conference of Hemophilia Organizations (NACCHO)
Arizona Hemophilia Association, Inc.
arizonahemophilia.org
Weekend workshop held early in the year for planning, organizing, operating a bleeding disorder summer camp. Nationally known presenters share camp resources and techniques; explore camp programs and activities; facilitate networking and problem-solving.
Game On
Bayer HealthCare
English and Spanish
livingwithhemophilia.com
Empowers young adults with hemophilia to be accountable for their treatment, stay healthy, maintain insurance coverage, and plan for college and careers.
Living with Hemophilia Programs
Bayer HealthCare
English and Spanish
livingwithhemophilia.com/programs
A variety of programs addressing treatment, pain management, being prepared in an emergency, joint care and more.
Wingmen Foundation
wingmenfoundation.org
Nonprofit founded by two men with hemophilia offers support to people with bleeding disorders through physical fitness, fitness education, advocacy, financial assistance for physical rehabilitation, exercise equipment.
Generation IX
Gut Monkey
gutmonkey.com/generationix
Adventure education program led by Pat “Big Dog” Torrey teaches tangible mentoring skills through experiential learning in an unforgettable setting. Open to young men with hemophilia B, ages 14–30.
Junior National Championship (JNC)
CSL Behring
http://www.csljnc.com
First national golf, baseball, swimming competition for the bleeding disorder community. Gives children the chance to compete; provides education and information sharing for participants, parents, caregivers.
Gettin’ in the GameSM (GIG)
CSL Behring
csljnc.com/overview
Helps children with bleeding disorders participate in sports and get active. Local GIG events offer children and families sports tips from national GIG athletes with bleeding disorders.
Hello Talk®
Takeda
English and Spanish
bleedingdisorders.com/resources/events
Live education program for the bleeding disorder community. More than 25 Hello Talk topics cover disease state and lifestyle education.
Patient Notification System (PNS)
Plasma Protein Therapeutics Association
patientnotificationsystem.org
Confidential 24-hour communication system provides info on plasma-derived and recombinant therapy withdrawals and recalls through automatic electronic updates.
LadyBugs
Comprehensive Health Education Services (CHES)
ches.education/ladybugs
This program empowers women, age 16 and older, who have a bleeding disorder, care for someone with one, or are carriers. LadyBugs helps women advocate when making healthcare decisions for themselves or their loved ones; educates about medical developments, advocacy skills, and stress management techniques; encourages women to recognize that their health is important.
Mental Health Matters Too (MHMT)
Debbie de la Riva
mentalhealthmatterstoo.com
MHMT acknowledges the turbulent past of the bleeding disorder community and the psychological changes that may have resulted. This program creates awareness of mental health issues in the community and provides guidance and resources for mental and emotional care.
