Case Study: Sobi Pharmaceuticals achieves a trusted rare disease research registry with Motionstrand

Sobi Pharmaceuticals launches INTO-HLH in 2023 with Motionstrand, boosting registry participation and donations

Sobi Pharmaceuticals, along with Cincinnati Children's Hospital Medical Center and Texas Children's Hospital, faced the challenge of creating a supportive online community and research registry for the rare disease hemophagocytic lymphohistiocytosis (HLH). They partnered with the vendor Motionstrand to build an engaging and user-friendly website that would serve as a central resource for patients, families, and healthcare professionals.

Motionstrand developed a brand identity and website focused on community and hope, featuring uplifting imagery and a clear call to action. The solution included a user-friendly design for the registry and donation functions, supported by Motionstrand's expertise in Veeva Vault submissions to ensure regulatory compliance and a timely launch. The resulting award-winning platform successfully fostered a sense of community, encouraged participation and donations, and advanced support and research for HLH.

Sobi Pharmaceuticals