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HDYO is Hiring - Part-Time In Person Coordinator

January 22, 2024

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


Interested parties should send their resume and cover letter to info@hdyo.org with the subject of: In Person Program Coordinator.

In Person Program Coordinator (Contract Role)

The Huntington's Disease Youth Organization (HDYO) is excited to employ an In-Person Program Coordinator who will execute, manage, and coordinate various educational programs and administrative support in alignment with the goals set forth by the HDYO Board of Directors and the Executive Director. This remote position will require you to work closely with the Executive Director, HDYO Education Committee, and some Board Members

Salary: $21,500 - $28,500 annually based on estimated hours Hours: 22.5 hours per week (equates to 3 days a week but there is flexibility on days worked) Fixed term contract for 12 months with possibility of extension dependent on funding. Location: Remote from your home based in the USA Reports to: Executive Director

About HDYO The Huntington’s Disease Youth Organization (HDYO) is a non-profit that provides support and education to young people (aged up to 35) impacted by Huntington’s disease (HD) around the world. We are an official entity in both the USA (501c3) and United Kingdom. Our goal is to provide support and education for young people impacted by HD globally. We do this by providing professional support online, creating educational content for all age groups (kids, teens, young adults, parents, professionals), making our site and content available in as many languages as we can, connecting young people with their peers, holding events such as youth camps and conferences around the world, motivating and providing opportunities for young people to get involved and working with other HD organizations to improve their offerings to young people.

In-Person Programs

Young Person Camps Camp offers young people the chance to meet others impacted by HD, to learn about HD through educational workshops, share experiences and have fun participating in the many on-site activities like swimming, rock climbing, hiking, archery and more. Goal - We aim for young people attending camp to benefit by feeling less isolated, more supported, as well coming away from camp with an improved understanding of HD and strong peer connections with other young people in similar situations. There will also be an experienced team of HD professionals and volunteers on-site to support young people at all times. HDYO has an exceptional record of holding amazing camps for young people impacted by HD. Camps and similar events are held in North America, Europe/UK and Australia depending on the year. Video impact of Camp: https://youtu.be/9u9nC3pQzmQ

International Young Adult Congress HDYO’s International Congress is a way for enhanced education and community building among young adults impacted by Huntington’s disease. Hundreds of attendees travel worldwide and feel empowered by being in a room full of others who understand what being impacted by HD means. Congress features a range of session tracks running simultaneously throughout the day covering many aspects of HD. Our speakers for the event are amongst the most well-known names in the HD community. They are from a range of groups including young people, families, pharmaceutical companies, researchers, genetic counsellors, neurologists, psychologists, HD Associations and many more! Congress locations vary and will take place every other year. View a video on the impact of Congress: https://www.youtube.com/watch?v=iVgXCMvM7IY&feature=youtu.be

Responsibilities · Meet objectives in all stages of event planning, design, and production of all in-person and hybrid events. · Manage planning and execution logistics for HDYO Camp and Congress. · Manage event budget including revenue and expenses. · Develop Request for Proposal criteria for site and service providers for Camps and Congress. · Research, analyze, and report results of RFP to determine recommended meeting sites and services. · Coordinate with Convention Visitor Bureaus (CVB), if needed. · Conduct site visits and direct planning meetings as approved based on location and funding. · Supervise site selection and essential suppliers for events. · Select general services contractors, registration, housing, audio-visual & presentation management services, and all other essential suppliers, or single solution providers. · Negotiate hotel, venue, and vendor contracts for all meetings and ensure contract fulfillment as required. · Support Executive Director to develop planning committees for events. · Have an understanding of educational programming as well as logistical planning. · Collaborate with marketing team on branding, materials, and promotion of events. · Collaborate with internal teams to determine appropriate structure for the event experience. · Act as liaison for vendors and programming team to ensure project coordination and meeting deadlines are fulfilled. · Manage compliance with all insurance, legal, health, and safety obligations. · Manage issues and troubleshoot emerging day-of-event matters. · Contribute to overarching organization goals by participating in cross-functional working groups. · Manage and track sponsorship participation including travel and accommodations. · Attend Congress and Camps based on needs and budget. · Work with sponsors, partners and attendees to ensure needs are met in regard to event experiences.

Required skills and qualifications · Experience in event planning or event coordination. · Proven track record of creative, successful events. · Experience working with colleagues in graphic design, sales, marketing, and communications. · Excellent organizational, communication, negotiating, and multitasking skills. · Ability to remain calm under pressure and maintain a community-forward mindset. · Empathetic heart and ability to connect with others.

Preferred skills and qualifications · Bachelor’s degree (or equivalent) in hospitality management, public relations, education or related fields. · Experience in managing budgets and tracking expenses · Advanced knowledge of PowerPoint, Excel, Adobe Design, WordPress · Experience working in rare disease communities or healthcare. · Experience working with young adult programming

Interested parties should send their resume and cover letter to info@hdyo.org with the subject of: In Person Program Coordinator.

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