You Can Be
a Leader in
the Hemophilia
Community
Take your leadership skills to the next
level, all while making new friends
and connecting with people like you.
Let's get started!
The Step Up Reach Out and AFFIRM programs are funded by Bayer.
Step Up Reach Out
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Speaking Frankly is a candid online resource that features content on topics of interest to teenagers and young adults with hemophilia worldwide. The site casts light on often taboo subjects such as sexuality, drugs and depression, and offers lively coverage of lifestyle topics including travel, entertainment, health and fitness. The website is led by a team of writers and editors who are members and alumni of the SURO and AFFIRM programs.
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SURO is an international youth leadership program designed to develop and train young adults in the bleeding disorders community who have the drive and ability to become leaders.
SURO was started in 2007 by the University of Texas Health Science Center, Gulf States Hemophilia and Thrombophilia Center (UTHS). Today, it is administered by Global Blood Disorders, Inc.
WHAT'S INVOLVED?
- One-year commitment
- Participation in two sessions and an interim project
GOALS:
- Identify motivated individuals and foster leadership skills
- Connect up-and-coming leaders in the community
- Build understanding of the issues facing the global hemophilia community
- Help increase treatment standards across the globe
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Building the Foundation
of Leadership
Part I of the program will focus on teaching participants the basic skills they will need to become leaders in the bleeding disorders community. Specific activities will focus on:
- Team-building skills
- Communication skills
- Self-esteem activities
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- Tools for success
- Social media and video training
- Research and product development
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During the time between the two SURO sessions, participants will be asked to identify issues in their communities that need support and define action plans to address them.
PART II:
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In Part II of the program, participants will have the opportunity to further build their leadership and communications skills and learn from one another by presenting their action plans. Specific activities will focus on:
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- Public speaking and presentation techniques
- Presentations on individual projects
- Community advocacy
- Stakeholders
- Introduction to frankly.net
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The International AFFIRM Program is an international advocacy and leadership development program. It is designed to mentor men and women with a bleeding disorder, or working in hemophilia advocacy, as they further develop and expand their leadership and advocacy skills with the aim to bring better care, programs and treatment to their respective communities.
The International AFFIRM Program was developed and implemented in 2008 by James Munn, RN-BC, currently with the University of Michigan's Hemophilia and Coagulation Disorders Program, and Edward Kuebler, LCSW, currently with the University of Texas Health Science Center at Houston; Gulf States Hemophilia & Thrombophilia Center. This program is funded through an unrestricted grant with Bayer and managed through the Global Blood Disorder Foundation Inc. in the United States.
WHAT'S INVOLVED?
- Two-year commitment
- Participation in four program sessions
GOALS:
- AFFIRM attendees will receive a global view of the bleeding disorders community by attending 4 program meetings over a 2 year period using group, workshop style, didactic, integrated and experiential networking approaches of learning; and gain personal growth and development that fosters networking at all levels within the bleeding disorder community.
- AFFIRM attendees will gain experience and exposure to advocacy tools, lobbying and dealing with the media through educational sessions, role playing exercises and group presentations using defined economics focused case studies.
- AFFIRM attendees will gain self-awareness and experience in developing advanced leadership skills that are useful and pertinent to their respective communities.
- AFFIRM attendees will utilize bleeding disorders research and patient reported outcomes to bolster their advocacy efforts on a global level.
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Each program meeting agenda will have a specific focus designed to enhance the attendees' leadership and advocacy skills, raise their level of education and provide practice workshop sessions that offer hands on experiences.
THE IMPACT
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2022还能用的梯子 things that
SURO and AFFIRM members have done:
- Started a new hemophilia local chapter organization
- Served in a leadership position at a national hemophilia organization
- Launched a hemophilia camp
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- Represented the local hemophilia society before the department of health
- Educated healthcare providers about hemophilia
- Attended regional and global conferences on hemophilia
- Become thought leaders on social media in the hemophilia community
OUR LEADERS
VAIBHAV
2010-2011 class of
Step Up Reach Out
JORGE
2010-2011 class of
Step Up Reach Out
EMIL
2007-2008 class of
Step Up Reach Out
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2010-2011 class of
Step Up Reach Out
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2009-2010, Step Up Reach out
2013-2014, AFFIRM
CARLOS
2010-2011 class of
Step Up Reach Out