Problem: Delayed Diagnosis and Limited Information on Rare Diseases
Patients with a rare disease often face difficulty at every step of the way in their medical care, including diagnosis, treatment, and ultimately maximizing their quality of life. Patients can go years without understanding their condition due to a delayed diagnosis and a lack of information aimed at their needs. In parallel, physicians often need to learn about rare disorders and at minimum brush up on the latest information on them.
Solution: Develop Educational Videos and Infographics
NORD has been a long-term partner with Diffusion Studios in the creation of 2D videos and infographics designed to explain everything from the drug development process to diagnosis and treatment of rare diseases. Diffusion Studios works directly with NORD to ensure their content is appropriate for patients, caregivers, students, healthcare professionals, and researchers alike. Much of the content has also been created in English and Spanish to ensure a geographically wider impact. This partnership has resulted in the development of more than 100 pieces of content, so far all of which are freely available on NORD’s website, the Osmosis YouTube channel, and at Osmosis.org.
Results: Videos Educate Millions on Rare Diseases
Videos made in partnership with Diffusion Studios help NORD to provide its patients and patient organizations with information about rare diseases, while also promoting awareness among physicians and other medical professionals. As of July 2025, the videos created in collaboration with NORD had been viewed more than 6.7 million times.
When asked what they like most about working with Diffusion Studios, NORD Senior Advisor M. Dunkle shared:
“Responsiveness, high quality work, and (most of all) understanding the importance of providing educational content on rare diseases.”
– M. Dunkle, Senior Advisor, NORD
Watch a NORD partnership video:
Key Takeaways
- Rare diseases often face delayed diagnosis and limited patient information.
- Patients struggle with treatment and understanding their conditions.
- Physicians need updated knowledge on rare disorders.
- NORD and Diffusion Studios create free bilingual educational videos.
- Over 6.7 million views show the impact of these resources.
Sources
- Helderman, R., et al. Addressing challenges in diagnosis and management of rare diseases through interprofessional education. Rare. Volume 2, 2024. https://doi.org/10.1016/j.rare.2024.100044
- https://rarediseases.org/about/what-we-do/programs-services/
- https://youtu.be/WsbY6dywYkI