Rare Disease Advocacy Organization Code of Conduct

Working in rare disease advocacy requires an unwavering commitment to ethical standards, patient sensitivity, and transparency. This Rare Disease Advocacy Organization Code of Conduct template helps organizations establish clear expectations around patient story handling, research partnerships, and pharmaceutical relationships.

Rare disease communities are uniquely vulnerable and trust is paramount. This form ensures every staff member and volunteer understands their responsibility to protect patient confidentiality, handle personal stories with sensitivity, and maintain transparency in all external partnerships. Whether you're a patient advocacy group, rare disease foundation, or research nonprofit, this template helps you formalize ethical commitments that protect your community.

The template covers critical areas including patient story consent and usage policies, research partnership disclosure requirements, pharmaceutical industry relationship protocols, and conflict of interest declarations. Staff acknowledge their understanding of HIPAA-adjacent principles, social media guidelines for patient stories, and the importance of maintaining community trust.

Paperform makes it simple to collect these acknowledgments digitally, with conditional logic that adapts questions based on staff roles and responsibilities. You can require electronic signatures for formal agreement, automatically store responses securely with SOC 2 Type II compliance, and set up annual renewal reminders.

For organizations managing ongoing ethics compliance, Stepper can automate follow-up workflows—triggering training assignments when new staff complete the form, routing disclosure updates to compliance officers, and maintaining audit trails for all policy acknowledgments. This ensures your rare disease advocacy work maintains the highest ethical standards while building lasting trust with the patients and families you serve.