AFFIRM

November 11-15, 2023, Montreal, Canada

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SURO

November 10-14, 2023, Berlin, Germany

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A WORD ABOUT US

Global Blood Disorder Foundation (GBDF, por sus siglas en inglés) es una fundación sin fines de lucro creada para servir a la comunidad de trastornos hemorrágicos en todo el mundo a través de conferencias educativas, talleres y programas de capacitación para el desarrollo de habilidades.

Step Up Reach Out

WHO:

Men, ages 21-25, diagnosed with hemophilia A or B, or a related bleeding disorder

WHAT:

A one-year international leadership development program

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AFFIRM

WHO:

Men or Women, ages 26-38, with either a diagnosis of a bleeding disorder or working in hemophilia advocacy

WHAT:

A two-year international fellowship program to grow leadership and advocacy skills

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OUR LEADERS

YOGESH

YOGESH (India), 2017-2018 class of Step Up Reach Out

I was very inspired by the leadership attitude of SURO/AFFIRM attendees from my country and I always wanted to see the same attitude in myself. Step Up Reach Out has been an exceptional experience for me as well. I applied with an expectation to learn more about the important tools which will help me in uplifting my hemophilia community.

SURO gave me the exposure that enabled me to believe that I can make a difference in my community. SURO helped me in improving my personal and professional life.

SURO was a great combination of work and fun. The biggest advantage has been meeting young guys from different parts of the globe. Knowing about how hemophilia is managed worldwide has broadened the way I look at my bleeding disorder. At the same time, I now have friends from all over the world.

After SURO, I got an opportunity to work for the Global blood disorder foundation for which I traveled to a few more countries. This enabled me to enhance my skills and at the same time allowed me to know new Hemophilia stories and meeting people in the worldwide community.

I will recommend Step Up Reach Out to all young guys with hemophilia who have a desire to work for the bleeding disorders community.

JORGE

Jorge (Peru), 2010-2011 class of Step Up Reach Out

It’s really surprising how a program such as Step to Reach Out (SURO) changed my views about hemophilia. I wasn’t that sure the very first time I attended the meeting in San Francisco, but the power it had on me was unbelievable. Getting in touch with guys all around the world, sharing experiences from our own culture, helped me to realize that there’s a lot to do and that any effort, any step I made is just for that precise moment, because you — as a patient — must keep reaching out… Keep going! My decision to be part of SURO followed the work of a great Peruvian, who spends most of his time helping other patients, regardless of personal benefits.

Day and night before applying I thought: What can I do to make that happen? To contribute in my country, to use my knowledge in support of the little ones, or for those whom didn’t have the same opportunities as I did — different education, no treatment at all and many other reasons. After all, I said: “I will do my best.” The most important thing that I learned in SURO is that nothing is guaranteed. If I want to have a future, I must build it. All my activities should include hemophilia. There’s not going to always be the same doctor or insurance budget. Lobbying is necessary. The laboratories have to keep our voice top of mind. And for that, we must speak louder.

EMIL

Emil (Canada), 2007-2008 class of Step Up Reach Out

Step Up, Reach Out is unlike any other leadership initiative I have ever attended! I have made friendships to last a lifetime and connections that will serve me immensely as I continue to work with the bleeding disorders community.

I honestly didn’t know quite what to expect when I attended the first session. Would I get along with the other guys? Would I be able to relate to Hemophiliacs from other countries? Would I actually learn anything from the sessions? Would I have any fun?

The answer to all of these questions turned out to be a resounding YES! Being selected to participate with youth from around the world was incredibly empowering and also provided me with a brand-new eye-opening perspective of what it means to be a young man with Hemophilia in the world today. While we came from various corners of the world, we had many things in common. It was a thrill to live and learn with them for these 2 one-week sessions. We learned a lot and got a lot accomplished, but that doesn’t mean it was all work and no play:

I had the most fun I’ve had in a while at Step Up, Reach Out!

ANDREW

Andrew( Australia), 2010-2011 class of Step Up Reach Out

Since attending SURO, I have been focused on helping people with hemophilia stay fit and healthy through an initiative I created called “HaemFit” / “HemFit.” I am a personal trainer with severe hemophilia with inhibitors and realized how little information is available on exercising with hemophilia. With this initiative, I have successfully worked with people who have hemophilia to get them happy, healthy and “HaemFit.”

SURO has shown me that one person can make a difference and that if you work together then you can empower and give each other the tools to step up and reach out to your local and national community. SURO taught me the leadership skills I would need to step up, but more importantly, it enabled me to believe that I could. I am a better person and young adult for it, thank you SURO!

LINO

Lino (Switzerland), 2009-2010 class of Step Up Reach Out and 2013-2014 class of AFFIRM

In 2009 and 2010, I participated in the SURO program in San Francisco and Barcelona. The main reason I applied for the program was to meet other guys with hemophilia. Before, I did not know anyone in my age group who was affected by hemophilia.

The SURO program changed my life. Before SURO, I was not really interested in the hemophilia community, but after, I started to get involved. I campaigned for the board of our National Member Organization (Swiss Hemophilia Society) and got in! Now, I am a very active person in that scene. I have already attended four European conferences, and in 2013, I attended the WFH World Congress in Paris.

I recently became involved with the AFFIRM program and am starting to get other people engaged with the hemophilia community in Switzerland – even if it is just bringing a dozen guys together.

CARLOS

Carlos (Mexico), 2010-2011 class of Step Up Reach Out

In my state, there was not an institution or any organization that helped people with bleeding disorders. I joined the SURO program in 2010 and using the tools I gained in the very first meeting, I had already started my own Hemophilia chapter in my state (Advance Hemophilia A.C.) by the second meeting in Auckland, New Zealand. By the end of that year, I helped launch the very first hemophilia camp in the state of Colima.

With the all of the things I have learned from SURO, it gave me the chance to really apply it to my own community, to be able to help out people with hemophilia and unite the community. It has been almost four years, and we have had three camps to this day and created many other programs, such as the self-infusion program and YO CREO, a teambuilding motivational leadership program.

Speaking Frankly

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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