Paving the Way for Leadership, Advocacy and Professional Development

HAEA Youth Leadership Programs offer leadership, advocacy, and professional development opportunities for youth and young adults between the ages of 12 and 25. The HAEA’s Youth Leadership Council and the Social Media Internship programs offer a wide range of benefits, including professional growth, skill development, networking opportunities, and the chance to make a positive impact in the HAE and rare disease communities.

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Youth Leadership Council Program

The role of the Youth Leadership Council (YLC) is to provide valuable insight, perspectives, and support to ensure that the HAEA’s initiatives, programs, and advocacy efforts effectively address the unique needs and challenges faced by young individuals affected by HAE. The YLC offers an opportunity for youth to actively participate in decision-making processes and contribute to the mission of the HAEA.

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Key roles and responsibilities of the HAEA’s Youth Leadership Council

Advocacy and Awareness

Advocate for the specific needs and concerns of young individuals affected by HAE, raising awareness about their experiences within the rare disease community. Work with the HAEA to empower young individuals to become effective advocates for themselves and others within the HAE community.

Feedback and Insight

Collaborate with the HAEA to design and shape youth-focused programs, workshops, and events. Provide input on program content, format, and communications to ensure they resonate with and benefit young patients.

Program Development

Offer feedback, suggestions, and insights on the development of youth-focused programs, resources, and advocacy strategies.

Community Support and Outreach

Offer peer support and mentorship to other young individuals affected by HAE. Participate in or help organize support groups, webinars, or community events for youth. Collaborate with the Social Media Interns on awareness campaigns that specifically target youth, educating them about their condition and available resources.


HAEA Youth Social Media Internship Program

The HAEA Youth Internship program provides HAEA Youth community members between the ages of 15-25 with the opportunity to earn professional skills while connecting with their peers. Over the six month internship period, interns will learn about communications, social media, advocacy, and working in a professional setting.

The role of the HAEA Social Media Internship is multifaceted and encompasses various aspects, including communication, advocacy, and professional development. By creating engaging social media content, raising awareness, mobilizing the community, and developing valuable skills, our interns contribute to the HAEA’s mission while also enhancing their own professional growth and skills.

HAEA’s Social Media Internship engages young people in the following



Content Creation
Social Media interns are responsible for creating engaging and informative content for the HAEA Youth social media platforms. This includes crafting posts, stories, graphics, videos, and other media to effectively communicate the HAEA’s mission and messages.


Awareness Campaigns
Interns will plan and execute a social media campaign aimed at raising HAE awareness and promoting advocacy initiatives.


Awareness Building
Utilizing social media platforms to educate community members and policymakers about the challenges faced by individuals with rare diseases.


Program Promotion
Mobilizing the organization's social media followers, particularly young individuals, to participate in advocacy initiatives, such as letter-writing campaigns, advocacy alerts, and awareness events.

Using social media as a platform for sharing personal stories and experiences of young individuals with rare diseases and their families. This humanizes the advocacy efforts and underscores the need for support and understanding.

Professional Development


Skill Development
The internship offers the opportunity to develop valuable skills in social media management, content creation, digital marketing, and data analytics. These skills can be applied to future career opportunities.

Working closely with experienced professionals in the organization's communication and advocacy teams, providing mentorship and guidance in the realm of social media and advocacy.


Networking Opportunities
Collaborating with HAE affected peers, engaging professionals and experts in the rare disease field, creating valuable connections and potential pathways to future career opportunities or further involvement in advocacy work.

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