Rationale and Unmet Need

Rationale

The health needs of young adults are often overlooked by the health community. Although many young adults connect at local or national conferences, they return to their everyday lives and become disconnected from their peers. This is an opportunity to provide them the ability to remain connected and continue the conversations of relevant topics including the unmet needs among young adults. 


The challenges facing young adults differ from those affecting older adults and are not always being heard or addressed. The burdens that young adults carry include coping with their disease, talking with family, friends, and romantic partners about their health condition, planning their future (family and career), and finding beneficial and responsible peer-support. The transition from childhood or adolescence to adulthood is often a time of uncertainty and the onset of complex emotions.


In this situation, the target age group would be those between the ages of 18 to 35. While some disease specific patient advocacy organizations have begun to acknowledge the needs of this demographic, currently there does not exist an organization dedicated to providing year-round services for these individuals. We believe this will be an opportunity for young adults to share their journey with their peers and help improve their quality of life.


Social and emotional support will be provided through in-person and online meet-ups around a variety of topics that young adults find important. Local grassroots efforts will be fostered to build communities of affected young adults facing similar challenges. The end goal of Our Odyssey is to empower young adults to build their own local communities and enrich their lives.

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Unmet Needs

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  • How to talk to friends and family about your condition
    • How to tell friends and loved ones about living with/dying from disease
  • How to advocate for yourself and get involved
  • Intimacy/romantic relationships (dating and marriage)
  • Ways to get more involved within your community (through fundraising and advocacy)
  • How to fundraise for your cause (tips and tricks)
  • Public speaking and storytelling
  • Clinical trial and drug development process (also how to get involved in clinical trials)
  • Understanding what your options are when it comes to potential treatments (Ask yourself, what are my alternatives to this medicine?)
  • Transitioning into college or into a career
  • Transition of care (pediatrics to adults)
  • Family planning
  • Grief & loss
  • How to cope with your condition and accept the “new” normal
  • Transitioning off your parents' health insurance (learning how to deal with insurance and medical costs)
  • How to dress with your condition (going to a gala, interview, etc.)
  • How to connect social media with your disease (the pros and cons of social media)