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Research

Research opportunities

Families and individuals living with SELENON-RM can help move research forward. Here are ways to take part.

Why participation matters

SELENON-RM is so rare that every patient’s experience is valuable. Researchers need to understand how the disease progresses over time, so that future clinical trials can measure whether a treatment is working.

That knowledge can only come from the people living with SELENON-RM and their families. Taking part, even in small ways, helps bring treatments closer.

Stay informed

Get notified about future studies

As new studies, registries and, one day, clinical trials open, we’ll share them with families who want to know.

Email us to be notified
With our partners

Take part today

Research opportunity

Help drive research with Citizen Health

Citizen Health · partner of Giving Strength

Through our partner Citizen Health, you can gather your medical records from all of your providers in one secure place, and get an AI advocate that helps you:

  • prepare for appointments and explore treatment options
  • understand complex medical records
  • draft school and insurance documents

If you choose, your de-identified data can help researchers understand how SELENON-RM progresses. That knowledge is essential for designing future clinical trials.

Get started with Citizen Health ↗

Sharing your data for research is optional. Citizen Health’s AI tools don’t provide medical advice, diagnosis, or treatment recommendations.

Related research

The Digital Natural History Study

Citizen Health’s platform powers a digital natural history study of SELENON-RM, one of the research projects Giving Strength supports.

See it in our research portfolio