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Histio Ambassadors Champion Advocacy at the World Orphan Drug Congress

During the last week of May, the World Orphan Drug Congress (WODC) had its annual meeting in Washington, D.C. Last year, I was able to attend this event for the second time and found it to be very beneficial for networking, learning, and sharing ideas.

This year, while I was unable to attend myself, three of our Histio Ambassadors were thrilled to join on behalf of the Histiocytosis Association. To top it off, the Association team decided to submit an abstract (concise summary of an experiment or research project) in hopes of presenting a poster at the conference as well.

To our joy, our abstract was accepted, and the poster was presented at the WODC! The poster, which I will share a lot more about in an upcoming blog, was titled Patient Advocacy Ambassador Program: A Model for Bridging Gaps for Rare Diseases. The poster described the Histio Ambassador Program in detail, and more importantly, highlighted the impact the Ambassadors have had. This impact was made collectively through awareness projects, participation in research, and support for others on a histio journey as well.

As eager as I am to share this with you, I wanted to focus today’s blog on the experience of the three Ambassadors who attended the WODC. Today’s blog gives an inside peek into the event and how the Ambassadors were able to learn and share over the 3-day conference.

Histio Ambassador, Drew:

Overall, the WODC was an amazing experience. Getting to meet a large network of individuals from patient advocacy groups, start-up companies, pharmaceutical companies, etc. There was a plethora of knowledge and experience. It was great to learn about breakthrough medicines and technologies as well as hear from advocacy groups on how to be more efficient. 

The coolest moment for me was hearing from the Commissioner of the FDA, Dr. Robert M. Califf. It’s not every day you get to hear from someone in his role. 

My biggest takeaway was the importance of patient advocacy groups and how much power they wield. Those who are experiencing the disease ultimately can provide the greatest feedback and recommend where resources should be deployed. 

Our poster caught everyone’s eye. The reoccurring theme was that other organizations use patient advocacy as a resource, but not to the extent that the Histiocytosis Association is. By getting us all into the community and spreading awareness, we are truly making an impact. 

Histio Ambassador, Nate:

My experience at the World Orphan Drug Congress was incredible! Not only did I recently just learn Patient Advocacy was a job title before switching my major and pursuing it, I also never could have imagined how large the advocacy community is. There were amazing seminars and people that inspired me and taught me new information regarding the rare advocacy space.

The coolest moment from the conference was learning about other advocacy groups and the mission they are on to build community within rare patients. There were many booths that we had the opportunity to learn from; not all focused on direct patient care, in fact a lot of the booths were informing us of the new medical technology advancements they have made or are in the process of making.

My biggest takeaway was the confirmation that I made the right decision switching my major and pursing Patient Advocacy. Every seminar and conversation showed me how well I fit in, and the many different ways I can help push the agenda to increase patient advocacy. I also recognized that in a room full of people dedicated to advocating for patients with rare diseases, those who have heard of histiocytosis can still be counted on one hand. The existence of an advocacy group dedicated to raising awareness for histiocytic disorders is so needed because the resources available are very slim.

Histio Ambassador, Michelle:

I had the honor of meeting amazing folks, and it was wonderful to meet some of the other Ambassadors in person as well. We even connected with Dr. Al Freedman, who has led some talks for the Association in the past! I am glad I made the Histiocytosis Association a priority and hope that our participation at this meeting can help.