Internship Opportunity with the Aicardi-Goutieres Syndrome Advocacy Association

The Aicardi-Goutieres Syndrome Advocacy Association (AGSAA) is seeking college undergraduates to apply for a volunteer or for-credit summer internship. The program is designed to provide both collaborative and individual work experience in resource development and project management to support patient advocacy efforts in our rare disease community.

For any questions or clarification please contact info@agsaa.org.

Interested graduate students may also apply, or email us about setting up a patient advocacy rotation that meets their specific program requirements.

About AGS and the AGSAA

Aicardi-Goutieres Syndrome (AGS) is a rare genetic disorder that primarily affects the developing brain, spinal cord, and immune system, often resulting in profound developmental delays, lifelong physical impairments, and persistent neurological changes.

The Aicardi Goutieres Syndrome Advocacy Association (AGSAA) is a 501c3 nonprofit foundation comprised primarily of parent caregivers volunteering their time to this important cause. We’re focused on accelerating research and providing timely emotional outreach and educational support alongside evolving clinical care recommendations to affected families.

Where You Fit In:

We plan to create a unique internship experience guided by the skills and interest of each accepted applicant. If you intend to enter the field of scientific research, medicine, or data management you could get direct, hands-on experience into rare disease research, clinical trials and the preparation that this kind of work entails. If you are interested in pursuing social sciences, we have a vibrant and diverse community of AGS-affected families around the world in need of dynamic resources, thoughtful support, and targeted communications to help make their journey easier. This internship will give you a detailed look into the lives of those affected by AGS and the ways that researchers, clinicians, and advocates are fighting this disease. We are looking for young minds that we hope may develop a career spanning passion for this cause.

WHAT YOU WILL BE DOING:

• Applicants can expect to spend between 4-12* hours a week for approximately 8 weeks (tentatively 06/03/2024-08/02/2024 or through August as desired) of remote tele-work on projects, with close contact with AGSAA staff mentors as well as coordination and collaboration with your fellow interns. *This is an estimate as schedule will be based on intern and AGSAA mentor availability. For credit-bearing internships, hourly schedules and timing can be adjusted to meet specific institutional program needs. We can also work flexibly around other summer jobs as needed.

• Depending on academic goals, experience, and interest, interns will be matched to one of the following mentors: Executive Director, Marketing Director, Research/Scientific & Operations Director, Patient Advocacy/Family Support, Board Team & Special Programs. 

Examples of projects may include but are not limited to:

• Supporting the team in its organization, execution, and goals for our Contact Registry, Newborn Screening Program, Family Support Program, Fundraising, and Globalization Initiatives, among other key projects. 

• Gathering, drafting, editing and publishing various content to our website and social media channels under the mentorship of our team and participating in the development of topical Family Resource Guides, using tools like Google Workspace, Squarespace, and Canva.

• Problem-solving to propose, design, and implement novel projects and programs based on your own unique interests/area of study and thoughtful assessment of community needs and service gaps.

WHAT YOU WILL TAKE AWAY FROM THE EXPERIENCE:

• During the application review process, we will happily work with you and your College or University's Career Office to determine and support your eligibility for academic credit for this internship. If your institution has further requirements, we can integrate them into the program and ensure that they are met.

• Hands-on experience in a nurturing learning environment, as well as a truly unique opportunity for self-starters to creatively make their own lasting impact on AGS advocacy and research.

• Opportunity to extend internship into the school year based on performance.

APPLICATION REQUIREMENTS:

• Resume/CV

• A short meaningful essay that answers the following questions: “What does rare disease advocacy mean to you?” and "How do you intend to use this experience in your career?" For applicants directly impacted by a close connection to AGS, please feel free to highlight or focus on how this has shaped your desire to apply.

• If you are a previous AGSAA intern, please send us an informal update and paragraph of intent for this summer.

• High school students will also be considered in special circumstances.

DEADLINE:

Applications are due by May 19, 2024 for an estimated June 3-7, 2024 start date.

We recommend that interested applicants reach out informally with their intention to apply at info@agsaa.org with subject heading of AGSAA Internship, as soon as possible. For credit-bearing internships, your institution may have additional deadlines that need to be met in advance of these dates, so please speak with your academic advisor et al to determine criteria. If you require additional time to submit your application, please include expected timeframes in a cover letter.