February 2014 / Volume 2, No. 1

Fun, friendly, life-changing: youth groups

A youth group is much more than a collection of young people who meet on a regular basis. In addition to helping young people gain self-confidence, improve interpersonal and communication skills, and develop a strong support network, a youth group is a place where you can celebrate being part of the bleeding disorders community. You can share the challenges and joys of living with a rare condition, find new friends, get advice, participate in fun and educational activities, and take steps to make a change in your community.

Starting a youth group

Your national or local hemophilia society might already have a youth chapter. If not, they may be able to put you in touch with other young people interested in forming a youth committee and suggest specific ways for you to get involved.

Your group will need to be based somewhere, and although meetings could start out in somebody’s house, it makes sense to find a larger space. See if your school, local hemophilia chapter, library, community centre, or religious organization has space that you can use. It should be accessible to all members (look for ground level rooms or buildings with elevators and access ramps instead of stairs).


Of course you can’t have a youth group without members! Age may be more about how you feel than calendar years, but a youth group is for young people. You can decide the appropriate range for your group, but the World Federation of Hemophilia (WFH) defines young people as those between the ages of 15 and 30.

Good places to recruit members include your local hemophilia centre and the hematology unit of nearby hospitals or clinics. An eye-catching poster with contact and meeting information, or a pamphlet that people can keep, are good ways to promote your group. You could create a Facebook group or other online social media presence, though this may be more beneficial once you have a solid member base. Word of mouth is always a great way to let people know about your group, so talk it up!

Values, visions, and goals

Values, vision, and goals help solidify the reasons for your group’s existence, what you are working towards, and what members can expect from their involvement.

VALUES are qualities that are considered worthwhile, such as choosing to be compassionate rather than indifferent about other peoples’ illnesses. Values represent the group’s highest priorities and are a deep source of motivation, providing structure and guidance for decision making.

Group values are shared by members and could include:

  • Inclusivity – we all have a bleeding disorder and are therefore part of a vibrant community
  • Commonalities over differences – no matter what race, religion, customs, or practices we may have, we are united by the fact that we are all living with a bleeding disorder
  • Facing the realities of life with a bleeding disorder while standing proud and fighting for improvements

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What’s next?

Getting things done

As your youth group grows, it needs structure to be successful. We will explore the roles and responsibilities available to potential members of the group’s management or steering committee.

VISION is about the future – what your group wants to be or the kind of world it would like to be part of. An organization’s vision is inspiring and provides direction. For example, the WFH’s vision is “Treatment For All”: that one day, all people with a bleeding disorder will have proper care, no matter where they live.

Your group’s vision could include:

  • Local sports teams welcoming teens with bleeding disorders
  • Affordable access to treatment for all young people with bleeding disorders in your country
  • A community of friends and family that understand and are comfortable with the realities of living with bleeding disorders

GOALS describe what the group wants to achieve, and are usually driven by the organization’s vision. Short or long term, they should be achievable to ensure that group members remain engaged and do not lose motivation. For example, wanting to raise $100,000 is impressive, but you are more likely to reach or even surpass a more realistic goal. This does not mean that your group cannot have larger dreams, but that you are more likely to realize them through several smaller steps.

Your youth group’s goals could include:

  • Organizing information sessions for group members
  • Raising money for your local hematology unit
  • Improving quality of life for members and their families
  • Ensuring all local youth have visitors when recovering from a bleed

A youth group is a fun place to meet people who understand what it’s like to live with a bleeding disorder, but it is also a place of action. Make an important difference by joining or starting a youth group today!

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Did you learn something useful from this article? What would you like to get out of a hemophilia youth group?