Companies, marketers, and HCPs can help patients take a more positive and proactive approach to living with a rare disease. To empower patients with rare disease, let them know:

1. You are not alone.

An estimated 3.5–5.9% of the world’s population is affected by rare disease. That’s between 263 and 446 million people! Know there are others in similar situations, and that together, we are stronger.

2. Trust your instincts.

You know yourself (or your child) best. If something doesn’t seem right, trust that inner voice and keep pushing until you get answers.

3. You deserve a timely diagnosis, regardless of whether treatments are available.

A diagnosis is great for approved treatments and clinical trials, but even without those, you deserve to know the “why” behind your symptoms.

4. You are your best advocate.

There are organizations out there dedicated to getting you what you need to manage your disease, and it is great to tap into them. However, your voice is your most powerful tool for change. Don’t be afraid to use it!

5. You can teach others.

Everyone benefits when you talk about your rare disease. Take every opportunity to educate those around you, especially healthcare providers and decision makers.

6. Celebrate small victories.

Whether it is finally getting approval of a medication or device, learning a new adaptation, or simply getting out with friends, rejoice in every little “win.”

7. Create your new “normal.”

Surround yourself with people in the rare disease community. Join groups online. Attend conferences. Make connections with those in similar situations. When you do, you will realize just how “common” rare can be.

8. Your disease is a big part of you, but it does not define you.

It is important to stay connected to things that make you, you. Try to make time in which you can forget about your disease and focus on other interests.

9. It’s okay to make mistakes.

This is true of life in general, but especially when you are juggling the many responsibilities that come with managing a rare disease. You may not handle everything perfectly, and that is perfectly okay.

10. Know that rare is beautiful!

I recently attended the Global Genes RARE Patient Advocacy Summit and was inspired by many fearless individuals relentlessly advocating for better care and greater societal acceptance of rare diseases. One of the overriding themes I walked away with was that each person (or family) living with a rare disease makes our world better, brighter, and more beautiful—just by being in it.


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