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In the Community

The adventure of a lifetime from the Coalition for Hemophilia B

Aptevo Therapeutics is proud to be the sole sponsor of the popular Coalition for Hemophilia B Generation IX Project, the only national program designed specifically for – and by – those living with hemophilia B. Led by Pat “Big Dog” Torrey and the team at Gut Monkey, the Generation IX Project supports the hemophilia B community with a series of mentorship, advocacy, and leadership programs that challenge, educate, motivate, and empower participants to make positive changes in their lives and in their communities.

Download the January 2018 Generation IX Project – Leadership Program FAQs. Applications due by Dec 1, 2017.

Follow the Generation IX Project on Facebook or connect with the Coalition for Hemophilia B for the latest program updates.

The Generation IX Project is an innovative mentorship program for teens and young adults. People with hemophilia B aged 14 to 30 work together as mentors and mentees to build the leadership and life skills they need to succeed.

  • Mentors aged 18 to 30 will receive leadership training that will serve them long after the program.
  • Mentees aged 14 to 17 receive guidance and support for a truly rewarding experience.

Generation IX: Reaching New Heights

Generation IX: Calling all B's

Generation IX: Year 2 Gets Even Better

The Generation IX Community Leaders Project is an opportunity for young adults that live with hemophilia B to develop interpersonal skills and find their very own personal leadership style. Participants travel to South Florida and work as a group to overcome challenges that will equip them to become future leaders in the hemophilia B community.

  • Open to anyone living with hemophilia B who is aged 18 to 35
  • Participants will learn how to lead and become active members of the bleeding disorders community

Generation IX Builds Stronger Leaders in Florida from Aptevo Therapeutics

The Advocacy program brings together young mentors in Michigan with older mentors to share experiences, knowledge, and awareness.

The program goal is to foster understanding between generations of individuals with hemophilia B to help advocate and strengthen the hemophilia B community.

Giving you an experience that’s anything but ordinary.

At Aptevo Therapeutics, our goal is to help people with hemophilia B by providing high-quality, specialized therapies, connecting with people to learn about their needs, and developing empowering programs that enrich peoples' lives.

B More

This program just for people with hemophilia B helps deliver a brighter future.

You’re doing remarkable things, and there are many more you want to do. Whatever they are, the Aptevo B More Scholarship is designed to help.

  • Recipients receive a scholarship to use for any type of post-high school education.
  • Scholarships cover undergraduate, graduate, doctoral, trade schools, and certifications in the United States. Enrollment can be part time or full time.
  • Scholarships are awarded based on a number of criteria.
  • There is no age limit.

2017/2018 Applications have now been closed. Sign up for updates to learn when 2018/2019 applications open in early 2018.

Aptevo's resource programs are available to all eligible patients regardless of which factor IX product you use.

B Active

Our B Active speaker sessions help enrich peoples’ lives with practical, informative, and engaging activities that help you “B Active” on a regular basis.

Speak with your Hemophilia Territory Manager about attending an interactive talk in your area.

FACTOR IN the Family

Women and girls can and do have hemophilia

Women with hemophilia B don’t just face unique bleeding challenges—getting the right diagnosis and treatment can be an uphill battle. This program will help all community members advocate for girls and women who have a bleeding disorder, understand the obstacles the “carrier” label may bring, and discover why factor level alone may not dictate a woman’s need for treatment.

Facing the Pain of Hemophilia

Dealing with chronic pain and medication abuse

As someone with hemophilia, you may experience physical pain every day. This program helps you understand the full impact that pain has on you and your family. You'll discover useful tips to recognize potential pain medication abuse. And you'll get details on complementary therapies that might help you better deal with pain.

Using Fitness to Fight Back

Discover how physical fitness can help defend against injury for people with hemophilia. Learn how to safely utilize fitness components like flexibility, core stability, strength training, and body movements to help prepare your body for a healthy, active lifestyle.

Rebuilding the Body With Diet

Understand the components of food to help balance not only a plate, but an entire day’s nutrition. See how specific patterns in diet may impact areas affected by hemophilia. A healthy diet can be fun and affordable, and help to build a strong, resilient body.

Reconnecting the Mind and Body Through Fitness

The power of the mind is infinite. Learn how the power of the mind is suppressed through stress and activated through relaxation. Tap into this power by entering present-moment awareness and discover how having a healthy mind can help you deal with obstacles caused by hemophilia to unleash your fitness potential and enhance athletic performance.

How Not to Marry Your Mother

If you have hemophilia, is factor all it takes to cut the apron strings? Come and gauge your independence readiness. This interactive presentation will provide you with resources and self-management tools to help you with self-sufficiency and increased confidence.

Aptevo's resource programs are available to all eligible patients regardless of which factor IX product you use.

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Reference: 1. Data on file. Berwyn, PA, Aptevo BioTherapeutics LLC.

INDICATIONS AND IMPORTANT SAFETY INFORMATION

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What is IXINITY?

IXINITY [coagulation factor IX (recombinant)] is a medicine used to replace clotting factor (factor IX) that is missing in adults and children at least 12 years of age with hemophilia B. Hemophilia B is also called congenital factor IX deficiency or Christmas disease. Hemophilia B is an inherited bleeding disorder that prevents clotting. Your healthcare provider may give you IXINITY to control and prevent bleeding episodes or when you have surgery.

IXINITY is not indicated for induction of immune tolerance in patients with hemophilia B.

IMPORTANT SAFETY INFORMATION for IXINITY

  • You should not use IXINITY if you are allergic to hamsters or any ingredients in IXINITY.
  • You should tell your healthcare provider if you have or have had medical problems, take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements, or herbal remedies, have any allergies, including allergies to hamsters, are nursing, are pregnant or planning to become pregnant, or have been told that you have inhibitors to factor IX.
  • You can experience an allergic reaction to IXINITY. Contact your healthcare provider or get emergency treatment right away if you develop a rash or hives, itching, tightness of the throat, chest pain, or tightness, difficulty breathing, lightheadedness, dizziness, nausea, or fainting.
  • Your body may form inhibitors to IXINITY. An inhibitor is part of the body's defense system. If you develop inhibitors, it may prevent IXINITY from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for development of inhibitors to IXINITY.
  • If you have risk factors for developing blood clots, the use of IXINITY may increase the risk of abnormal blood clots.
  • Call your healthcare provider right away about any side effects that bother you or do not go away, or if your bleeding does not stop after taking IXINITY.
  • The most common side effect that was reported with IXINITY during clinical trials was headache.
  • These are not all the side effects possible with IXINITY. You can ask your healthcare provider for information that is written for healthcare professionals.

For more information about IXINITY, please see full Prescribing Information, including Important Patient Information.

You are encouraged to report side effects of prescription drugs to the Food and Drug Administration. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.