The Power of Community, Connection, and Patient Advocacy

The sense of connection is deeply woven into the greater Simons Searchlight community. There are different ways this sentiment can be felt by families, such as meeting for the first time at a conference, sharing advice in online groups, coming together at a bike race to raise awareness, and sometimes just in daily conversations. The Simons Searchlight team values these connections and the many passionate people who work hard to raise awareness about rare genetic disorders.

Patient advocacy organizations play an important role in fostering these relationships. Simons Searchlight works closely with over forty patient organizations that range from formal 501(c)(3) non-profits to active Facebook groups and everything in between. Some organizations even mentor one another by sharing best practices.

We also recognize and value the role of these organizations in further amplifying the visibility of Simons Searchlight and together, we continue to grow these genetic communities. The ongoing support of patient advocacy organizations to further connect with families, individuals with genetic disorders, and caregivers is critical to the long-term impact of our research program. We send a big thank you to these patient organizations, their respective leaders, and board members who work every day to help improve the lives of people from these communities. Without your support, Simons Searchlight wouldn’t be as strong as it is today. We encourage you to learn more about your genetic community by visiting our website.

Keep reading our “News and Updates” page to learn more about other Simons Searchlight happenings.