Activating the sickle cell community through partnerships, in and outside of the SCD space and ongoing communication with our network.
The Sick Cells Ambassador Program is a volunteer network of advocates dedicated to changing the landscape of sickle cell disease. There’s strength in numbers, so we’re empowering advocates to unite and spread awareness to our larger community.
Sick Cells created this program to put our own community at the forefront of conversations around SCD. Advocates and patients are often left out of critical conversations and opportunities and a shift was needed. By activating sickle cell advocates and educating each other on policy issues, we look to boost the impact our collective voice can have in the real world.
We want all Ambassadors to have the critical advocacy skills necessary to have an impact. The Ambassador Program’s aim is to inform, unite and empower the SCD community in order to achieve the following:
policy makers about the challenges faced by and the needs of the SCD community;
the sickle cell community to coalitions and other organizations that impacts their health;
the sickle cell community on advocacy through partnerships, in and outside of the SCD space and ongoing communication with our network.
Online training allows Ambassadors to communicate efficiently in their respective locations. The Ambassadors program offers various types of online training. The program has webinar campaigns as educational tools, utilizing social media, and shares best practices online.
A Tea Chat is a monthly 30 minute call that lists current events and opportunities in the realm of policy for the sickle cell disease community. All ambassadors can submit their updates prior to the call.
The Ambassador Priority Topic Meeting (PTM) is a virtual call to discuss current priorities and advocacy initiatives. We’ll cover topics such as ensuring access, coverage, policy, legislation, and economic burden of SCD.
In December of 2017, Sick Cells learned of a travel stipend available to attend Rare Disease Week. Just ten days before the travel stipend closed, the Sick Cells team also learned that only a few sickle cell disease advocates had applied for the opportunity. What’s more, we found that the majority of the community was unaware that SCD was even considered a rare disease.
With ten days until closing, two volunteers from Sick Cells called advocates in all 50 states to inform them of the stipend. This quick action resulted in over 100 SCD advocates applying for the travel stipend and over 40 SCD advocates attending rare disease week. While there, it was evident that sickle cell advocates are very active and have important perspectives on healthcare that are frequently missing from conversations. It was in that moment that the Ambassador Program was born.
In 2019, the Sick Cells’ Ambassador Program recruited and engaged SCD advocates to advance the interests of SCD patients. The Ambassadors participated in multiple events, activities and projects, often being the first SCD advocates to do so. Some top successes of 2019 included referring SCD advocates to attend ten national conferences and meetings.
Below highlights highly attended meetings through our recruitment efforts:
Rare Disease Week, hosted by the EveryLife Foundation – recruited over 30 SCD advocates to attend and hosted SCD ambassador forum
Biotechnology Innovation Organization (Bio) Patient Advocacy Summit – Spoke at and recruited 16 SCD advocates to attend and hosted ambassador forum
By building on our history, we’re able to carry the momentum of activating and educating advocates into 2020 and beyond. We’re full steam ahead on bringing passionate advocates into the program — to better promote collaboration within SCD.