NORD’s RareLaunch Platform Now Offering 2 New Courses

Patricia Inácio, PhD avatar

by Patricia Inácio, PhD |

Share this article:

Share article via email
Ruzurgi in Canada | Lambert-Eaton News | illustration of woman using megaphone

The National Organization for Rare Disorders (NORD) has expanded its hands-on tools and courses for organizations focused on rare diseases, such as Lambert-Eaton myasthenic syndrome (LEMS).

Supported by the Chan Zuckerberg Initiative, NORD’s RareLaunch program provides patients and caregivers with the tools necessary to launch a nonprofit. It also gives rare-disease organization leaders information to expand the impact of research.

“NORD is tirelessly committed to empowering all those who are working on behalf of the nearly 30 million Americans impacted by a rare disease. We are thrilled to build on our history of community engagement and leadership building with the latest addition to the RareLaunch program,” Pamela Gavin, NORD’s executive vice president, said in a press release.

Recommended Reading
Amifampridine SERB | Lambert-Eaton News | speaker making announcement illustration

US Court Won’t Rehear Its Ruling Overturning Ruzurgi’s FDA Approval

“Today’s release will serve as a springboard for all the individuals, families and innovators founding much-needed rare nonprofits here in the United States and around the globe,” Gavin added.

The RareLaunch platform is offering two free courses: Forming a Foundation and Research Ready.

Forming a Foundation details the steps and provides training tools for patients and caregivers interested in launching a nonprofit focused on a rare disease. Participants will learn about nonprofit good governance practices and receive information on how to successfully implement a nonprofit. These include learning about board recruitment, fundraising, strategic planning, and social media outreach.

The course is divided into eight lessons, each around 45 minutes.

Research Ready was designed to help guide individuals and/or organizations interested in becoming involved with research. The course will help participants understand the basis of natural history studies and their importance for treatment development. It will also explain how to collaborate with researchers and industry partners and how to become familiar with the International Review Board (IRB) process. The IRB is a committee of experts in charge of reviewing and monitoring biomedical research involving human subjects.

The course includes 11 lessons, each around 30 to 45 minutes.

Both courses were designed to build capacity and boost confidence as a pivotal member for the rare disease community’s growth and development.

The updated version of the RareLaunch platform includes videos from NORD’s RareLaunch 2020 and 2021 workshops, in which rare disease advocates and other experts shared their insights and tips on the best practices to establish and boost a nonprofit’s success.

Since launch, RareLaunch workshops have had nearly 1,000 participants, with over 700 people requesting access to workshop recordings.