Blog Posts

Rediscovering Life After an HOD Diagnosis Transformation

I was a completely different person before my HOD diagnosis. Let’s call it pre-HOD diagnosis transformation. Of course, I can only speak about my journey, but I am hopeful that my journey may be relatable to your journey. Before HOD, I was burning the candle at both ends AND in the middle. I was a successful businesswoman, working…
We’re in This HOD Life Together

A brief description of Brad’s journey…. by Lauren, Wife (October 5, 2023) The following is an accounting of one patient’s story with HOD. As we know, every patient is different. The stories are different, the symptoms are different. But the human condition, the grief, hope fear, and frustration….that’s almost always the same, though it comes and…
The Power of Patient Support Groups

By Christina Coates, HODA Board President The advent of social media has been both a blessing and a curse to patient support groups. As the leader of a relatively new rare disease patient advocacy group, I have a difficult time conceptualizing how pre-social media support groups were able to locate and engage their people. Social media has…

Rediscovering Life After an HOD Diagnosis Transformation