Cystinosis Research Foundation

Biannual Cystinosis Magazine

Client Type

Non-Profit

Services

Overview

THE SITUATION

Cystinosis Research Foundation (CRF) is the world’s largest provider of funding for cystinosis research. The foundation’s mission is to give a voice to the 2,000 patients worldwide living with the disease as well as to educate and empower the medical community to find a cure aided by the research it funds. Prior to partnering with Idea Hall, the organization produced a biannual magazine to keep its small community in the loop on all the latest research, funding and events. However, the publication lacked a clear messaging strategy, structure and cohesive design. CRF’s goal was to transform this magazine from a disjointed compilation of information into a compelling, inspiring publication that aims to evangelize the CRF mission, serve as a powerful fundraising vehicle and give a greater, global voice to the rare disease community.

THE SOLUTION

Idea Hall worked with CRF to completely overhaul the Cystinosis Magazine, recommending an entirely new content and design strategy that enabled the magazine to work as a powerful medium to aid CRF’s mission and recognize their 20+ years of fundraising and research by communicating the foundation’s work and driving continued education about the orphan disease. Since 2015, Idea Hall has written, edited, designed and distributed the spring and fall Cystinosis Magazine issues to thousands of key stakeholders worldwide.

THE IMPACT

Twice a year, the CRF community looks forward to receiving the Cystinosis Magazine to receive all the latest updates on cystinosis research, innovative new treatments, patient success stories and upcoming community events. As a result, the magazine has become a powerful tool for brand awareness, community engagement and fundraising for the Cystinosis Research Foundation. Each issue of the Cystinosis Magazine:

Raises approximately $25K – $30K for cystinosis research.
Reaches over 16,800 stakeholders via print edition.
Reached over 6,600 additional audience members on social media.

Event Marketing

Overview

THE SITUATION

Cystinosis Research Foundation (CRF) is the world’s largest provider of funding for cystinosis research. The foundation’s mission is to give a voice to the 2,000 patients worldwide living with the disease as well as to educate and empower the medical community to find a cure aided by the research it funds. Each year, CRF hosts two events to bring their global community together: the three-day Day of Hope Family Conference, and the Natalie’s Wish Fundraiser Gala. In the post-COVID era, and with the Natalie’s Wish Gala being converted to a virtual, month-long fundraiser, CRF’s goal was to reimagine these events to renew their community’s passion for CRF’s mission, excitement for connection and motivation to fundraise for better treatments and a cure for cystinosis.

THE SOLUTION

Each year, Idea Hall works with CRF to understand and leverage current community milestones to create unique event themes that inspire, unite and energize their global community. Idea Hall then supports and communicates this theme through an integrated messaging strategy, leveraging, designing and producing assets for printed collateral, email marketing, social media marketing, website design, event signage, custom promotional materials and more.

THE IMPACT

In response to receiving these event marketing materials, hundreds to thousands of doctors, researchers and families in CRF’s global community travel to Southern California to attend the three-day Day of Hope Family Conference, establish connections, learn and support the latest advancements in cystinosis research. Additionally, the Annual Natalie’s Wish Virtual Month-Long Fundraiser raises millions of dollars each year, with the 2024 event alone raising $1.1 million for better treatments and a cure for cystinosis.

Social Media Marketing

Overview

THE SITUATION

Cystinosis Research Foundation (CRF) is the world’s largest provider of funding for cystinosis research. The foundation’s mission is to give a voice to the 2,000 patients worldwide living with the disease as well as to educate and empower the medical community to find a cure aided by the research it funds. In pursuit of this mission, CRF was eager to find innovative ways to actively connect and engage their widespread, global community as well as educate cystinosis families about research advancements, fundraising opportunities, patient stories and upcoming events in an informative, meaningful way.

THE SOLUTION

Idea Hall developed an integrated social media marketing strategy to engage the global cystinosis community across public Facebook pages, private Facebook groups, Instagram and Twitter. After working with CRF to establish the organization’s social brand and voice, identify target audience characteristics, establish key content territories and design social media graphic templates, Idea Hall was charged with developing a monthly social media calendar to create a consistent, on-brand cadence of social content on all of CRF’s social platforms. Idea Hall would then review and analyze platform analytics at the end of each month to identify the most effective content territories and optimize CRF’s social media strategy accordingly.

THE IMPACT

Since launching CRF’s social media strategy in 2016, CRF’s social media platforms have experienced consistent growth with all key performance indicators. In 2024 alone, CRF garnered: