One of the most fulfilling things for me since Little Miss Hannah passed away in 2011 was to mentor other patients, families, and organization leaders to create HOPE for their community.
I’ve had the opportunity to work with over 1000 advocates in our rare disease community as well as hundreds of biotech/pharma partners towards one common goal – change for our future in the rare disease space. Whether that is starting or strengthening a nonprofit or support group, funding science for research, creating awareness and marketing campaigns, bridging connections, or just a shoulder to vent on — my passion was to help make it happen.
I will be continuing this passion in multiple ways including this blog, Twitter, and my Facebook page where I will share tidbits, articles, upcoming events, educational opportunities, and more with anyone interested in advocating for the rare disease space. This is a non-biased site, so you will see posts from many different organizations that work to support rare diseases groups, nonprofits, marketing, etc.
Little Miss Hannah’s Mom
Ostrea Consulting LLC