Rare Disease Day - Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families, and carers.

Welcome to the savvy safety sisters PARTNERS IN PREVENTION podcast I’m your host, Carrie Pasquarello With Global Secure Resources, today's guest is Dr. Erin Kyle, DNP, RN, CNOR, NEA BC. She’s a national leader in evidence-based perioperative practice and a passionate advocate for patient-centered care.

Today, we will discuss Preparing for the Unexpected: Disabilities, Decisions & Planning Ahead. Preparedness is not about expecting the worst — it is about creating confidence, reducing stress, and ensuring your wishes and safety are respected during unexpected life changes.

Tips:

Start the Conversation Early. Difficult conversations are often the ones families avoid—but they are the most important. Talk openly about medical wishes, caregiving preferences, financial planning, and quality-of-life priorities. Planning ahead reduces stress and ensures decisions reflect personal values rather than rushed choices during a crisis.
Put Legal and Medical Documents in Place. Essential documents provide clarity and authority during emergencies. Consider preparing: • Healthcare Proxy or Medical Power of Attorney • Living Will or Advance Directive • HIPAA Authorization Forms • Financial Power of Attorney. Having these documents ensures trusted individuals can advocate and act on your behalf if needed.
Build a Personal Safety & Support Network. Unexpected health changes or disabilities often require teamwork. Identify trusted family members, friends, healthcare providers, and community resources who can step in if needed. Share key information with them so they are prepared to help quickly and confidently.
Organize Critical Information in One Accessible Place. Create a secure and easy-to-access system that includes: • Medical history and medication lists • Insurance information • Emergency contacts • Password and account access plans • Care instructions or daily routines. When information is organized, families and caregivers can respond more quickly and effectively.
Plan for Lifestyle, Travel, and Daily Living Changes. Unexpected disabilities can impact mobility, communication, independence, and travel plans. Consider accessibility needs, transportation options, home safety adjustments, and contingency plans. Thinking ahead allows individuals to maintain independence and confidence even during life changes.

Resources: February 28th is Rare Disease Day, raising awareness and driving change for the 300 million people worldwide living with a rare disease and their families.

https://www.rarediseaseday.org/
Thnk CADASIL https://www.thinkcadasil.org/
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