Skip to Main Content
Back

Social Media

Disease & Medical Research

Relevant Skills

Brand Strategy Content Management Copywriting Social Media Marketing

Published Date

Posted April 14, 2026
Disease & Medical Research

Social Media Content Creation for Rare Disease Nonprofit (3-Month Content Build)

Project
Remote
KIF1A.ORG
Apply Now
* 1 person has applied to this opportunity
We’re looking for a strong and experienced social media content creator to build three months of ready-to-publish content that we can immediately put into action. This is a hands-on, execution-focused project. While strategy will play a role, the priority is creating high-quality, mission-driven content at scale. Over the course of this multi-week project, the volunteer will help us turn our story, research, and community into a consistent, compelling social media presence.

Scope of Work
1. Quick Audit (Light + Focused)
• Identify key gaps and opportunities
• Review a few industry-leading peer organizations for inspiration
• Provide concise recommendations to guide content

2. Content Framework & Calendar
• Establish clear content themes and cadence
• Build a 3-month content calendar aligned to priorities:
o Research updates
o Family and patient stories
o International community awareness
o Community engagement
o Fundraising and awareness

3. Core Deliverable: 3 Months of Content
• Create three full months of social media content (primary focus)
• Integrate existing website/organization into social media content plan and develop novel content
• Deliver a complete, ready-to-use content library, including:
o Post copy (platform-appropriate)
o Visual direction or asset suggestions
o Hashtags and engagement prompts
• Content should be:
o Clear, engaging, and emotionally compelling
o Accessible while maintaining scientific integrity
o Consistent with our voice and mission
o Centering the patient voice and experience whenever possible

Deliverables
• Brief audit summary
• 3-month content calendar
• Three months of fully developed, ready-to-publish social media posts

Ideal Volunteer
You are:
• A doer with strong content creation skills (not just strategy)
• A compelling storyteller and writer
• Experienced in social media, ideally with nonprofits or healthcare
• Comfortable translating complex topics into engaging content
• Able to work independently and collaborate with a small team
• A professional who can show us similar completed projects and participate in a brief Zoom interview process
Organization Overview: KIF1A.ORG is a patient-led, global nonprofit working to improve the lives of individuals with KIF1A Associated Neurological Disorder (KAND) and accelerate research toward a cure. We unite families, researchers, clinicians, and industry partners to drive progress for this ultra-rare, progressive condition.
Content & Story Access
Curated access to patient and family stories, including approved quotes, background context, and storytelling guidance
A library of existing website content, research updates, and past communications to draw from
Clear guidance on voice, tone, and messaging priorities, ensuring content remains consistent and respectful of the community

Visual & Brand Assets
Access to a centralized folder of brand-approved assets, including:
Logos, fonts, and brand guidelines
Existing photography of families, events, and community moments (with usage permissions clearly defined)
Prior social media graphics and templates for inspiration or reuse
Direction on visual identity and accessibility standards (e.g., readability, color contrast, inclusive representation)

KIF1A.ORG

No badges yet.

Location

New York, US-NY

Website

https://www.kif1a.org

Member Since

Mar 2026

Completed Taproot Plus Partnerships

0

Organization Mission

KIF1A.ORG is a global community dedicated to providing a lifetime of support to those affected by KIF1A mutations and accelerating research to develop accessible treatments for all. We work for a world where equitable access to care and life-long resources is a reality for every individual living with KIF1A mutations.

Program Focus Areas

Advocacy & Human Rights
Community Building
Diversity, Equity, & Inclusion
Healthcare
International Relations
Medical Research
Nonprofit Capacity Building
People with Disabilities
Other Needs from This Organization
See Similar Opportunities

See All

Opportunities

Project

Website development

Philanthropy & Capacity Building

The WildRoot Collective is seeking a web designer or developer to help us create a professional, user-friendly website that reflects our mission, programs, and community...

Posted

View Opportunity
The WildRoot Collection

The WildRoot Collection

Project

Messaging

Education

We are searching for a volunteer who can lead our development of a new and improved mission and vision statement that will communicate our purpose and vision to a variety of...

Posted August 21, 2025

View Opportunity

Heart-to-Heart

Project

Other

Community Development

As Girls in Gear continues to grow nationwide, we would like help establishing a corporate sponsorship strategy. Our goal is to obtain corporate sponsorships to support the...

Posted July 22, 2025

View Opportunity
Girls in Gear

Girls in Gear