ASXL Rare Research Endowment Foundation
Marketing strategy development
The ARRE Foundation (www.arrefoundation.org) is planning a conference for families with ASXL (ultra rare neurological) syndromes at the University of Michigan in July 2019. We need a comprehensive marketing strategy that covers all stakeholders (e.g. medical & scientific speakers, university attendees, families, volunteers, etc.) and diverse channels to drive awareness and engagement for this event. It is difficult for many families to travel so we would also like creative ideas for virtual engagement (e.g. live polling, etc.). These ASXL children have complex clinical issues (e.g. global developmental delays ~ cannot walk/talk/cognitive/growth/infant-like, respiratory, GI, nephrology, orthopedic, vision, cancer, etc.) and often see specialists who do not have the knowledge or experience to properly manage their care due to the rarity and unknowns of their syndrome. There are few evidence-based publications for reference and signiﬁcant unknowns about the mechanisms behind ASXL syndromes. This conference is incredibly important to build the knowledge and community of physicians, scientists, and families so that these children can obtain the proper care that they desperately need. As a volunteer, you can make a significant difference in the lives of these families who are suffering with extraordinary challenges on a daily basis. Information sharing and networking are critical to the success of our mission and to developing research that can lead to future treatments/cure. We have developed brand guidelines (https://www.flipsnack.com/F9A7ECB8B7A/a-re-s-brand-identity.html) and can leverage some of the materials from last year's conference (https://www.arrefoundation.org/asxl-conference/). ARRE Foundation has a number of volunteers who are involved in marketing and planning as part of our organization. These volunteers all have family members with ASXL syndromes and are fully committed to the success of our mission.
Drive evidence-based research and information distribution that will enable ASXL-impacted children to have an improved quality of life.
Step 1: Apply
Send the below info, and if interested, the nonprofit will select a time for a phone interview. You'll get a confirmation with everything you need to know.
Step 2: Interview
You'll have a 30 minute call to discuss the scope and deliverables of the project directly with ASXL Rare Research Endowment Foundation, and for them to confirm you're a good fit.
Step 3: Start
Once accepted, you'll be able to get right to work. We will check in with you periodically to make sure you have everything you need.