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 Education Summits
National Hemophilia Foundation (NHF)
English and Spanish
hemophilia.org
Educational summits for people living with inhibitors, covering most travel expenses for participants. The only national educational forums for inhibitor patients to meet and learn about their rare complication.
Inhibitor Family Camp
Comprehensive Health Education Services (CHES)
comphealthed.com
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.
Bayer Leadership U
Bayer HealthCare
livingwithhemophilia.com
Paid summer internship at Bayer’s US headquarters in Whippany, New Jersey. College-aged members of the hemophilia community can sharpen leadership skills while working alongside leaders at Bayer.
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.
And Now…Back to You
Bayer HealthCare
English and Spanish
livingwithhemophilia.com
Helps adults with hemophilia rediscover goals related to career, education, or passions, and create a plan of action for success.
Parents Empowering Parents (PEP)
Bayer HealthCare
English and Spanish
livingwithhemophilia.com
Provides tools, skills, and emotional support to parents of children with hemophilia.
Transition Ignition
Bayer HealthCare
livingwithhemophilia.com
Helps teens establish a comfort level with hemophilia and practice skills for managing treatment away from home.
Step Up Reach Out (SURO)
Bayer HealthCare
livingwithhemophilia.com
International youth program helps connect future leaders in the bleeding disorder community, with the goal of increasing treatment standards worldwide.
Affirm
Bayer HealthCare
livingwithhemophilia.com
International fellowship program helps men with hemophilia develop and expand leadership and advocacy skills by fostering networking within the bleeding disorder community.
HeroPath™ Life Coach
Novo Nordisk Inc.
mynovosecure.com
Coaching and peer support helps teens and young adults with bleeding disorders excel in daily life and chart a path forward. Based on findings from HERO (Hemophilia Experiences, Results, and Opportunities) initiative, the largest international study on the psychosocial impact of hemophilia on patients and their loved ones.
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.
Rebuild
Diplomat Specialty Infusion Group
diplomatpharmacy.com/rebuild
Collaborative preventive care program enhances physical therapy services and promotes positive therapy outcomes for people with hemophilia. Directed by physical therapist with over 20 years of hemophilia experience.
Share Your Why
Sanofi Genzyme
shareyourwhy.com
Professionally trained community members, called CoRe, are available to share their journey in hemophilia and help participants navigate their own. Connect with CoRe through videos, at regional meetings, and via email.
Generation IX
Coalition for Hemophilia B
hemob.org
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. Sponsored by Medexus Pharmaceuticals.
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
cslbehring.com
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.
Common Factors®
CSL Behring
800-676-4266
Community-based events unite and educate members of the bleeding disorder community. Common Factors Advocates share personal experiences and give presentations on topics for the community.
Hello Talk®
Takeda
English and Spanish
bleedingdisorders.com
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)
www.comphealthed.com
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.
June for Joint Health
National Hemophilia Foundation/Sanofi Genzyme
juneforjointhealth.org
About 80% of bleeds happen in joints, which may lead to permanent joint damage. June for Joint Health encourages patients to develop lifelong habits that promote safe, joint-building physical activities. Webinars and videos instruct on how joints work, how to maintain healthy joints, and physical therapy.
Looking Beyond Trough
Sanofi Genzyme
beyondtrough.org
For hemophilia B patients. Educational charts compare hemophilia A and B; show how factor IX operates in the bloodstream; define a trough; explain how treatment can protect you beyond your trough levels and why this 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.
