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Uniting for Rare Disease Advocacy: Reflections from Attendees 

By October 5, 2023Blog

The Rare Advocacy Summit, hosted by Global Genes, recently brought together a diverse group of individuals passionate about advocating for those living with rare diseases. This gathering was not just a conference; it was a week dedicated to fostering connections, enhancing advocacy efforts, and shaping the future of rare disease activism. Participants left the summit with a renewed sense of purpose and a commitment to building a stronger patient community. 

Advocacy Through Connection

One of the central themes of the Rare Advocacy Summit was the importance of connecting with individuals who truly understand the challenges of living with a rare disease. Participants found immense value in sharing experiences and insights with others who share their passion for advocacy. This sense of connection allowed them to build meaningful relationships that will strengthen their advocacy efforts in the future. 

The summit was not just a one-day event; it was a whole week dedicated to rare disease advocacy. This extended timeframe provided participants with ample opportunities to engage in discussions, attend workshops, and develop strategies for advancing their causes. The “Week in Rare” format allowed for a deep dive into the issues at hand, fostering a greater understanding of the complexities of rare diseases. 

In recognition of our impactful work, Global Genes invited us to participate in a significant panel discussion: “Grieving Diagnosis, Lack of Diagnosis, and Loss.” We couldn’t think of a better representative than our Peer Support Leader, Mindy Pace, who brings a unique perspective as both an individual living with a rare disease and as a parent of a child affected by one. Discussing her experience at the conference, she notes, 

“Everyone needs a place to feel like they belong. I found a sense of belonging and comfort like I had never felt before when I attended the Global Genes Conference in San Diego. Being a Peer Support Leader for Give an Hour, I usually feel connected to rare caregivers during our sessions, but it was very different to be in rooms full of rare disease providers, caregivers, and advocates. It was very empowering and also very overwhelming. I have never been in a place where so many people understood what it is like to live daily with a rare disease or be a caregiver to a child with a rare disease. 

Starting with getting my name tag, it was an experience I will never forget. They had little ribbons to put on our nametags to tell who we were. I was shocked to get to add so many ribbons to my nametag. I was a first-time attendee, speaker, rare disease advocate, someone with a rare disease, and a caregiver with a rare disease. So many titles in my life that never have really all coincided at the same time and place. It was a very powerful experience to discover how these things all worked together to bring me here to this place and time. I thought to myself, these are my people!” 

Shared Experience Binds us Together

The conference provided an opportunity for Give an Hour to listen and learn from the rare disease community. A powerful takeaway from the conference was the idea that connecting with others in the rare disease community reveals the commonalities that bind us all together. Despite the diverse range of rare diseases represented at the summit, the shared experiences, challenges, and aspirations of the participants served as a reminder that we are united by a common cause. In a community where individuals can often struggle to piece together information, Mindy notes that the conference offered a paradise of resources, 

“At booths all around the conference center, there were organizations or non-profits that had services or information to offer to participants. For someone who normally must struggle to find information or Google it, this was a bit of paradise. I learned about other rare diseases (which many had similarities with mine), services offered, organizations that helped with sports for kids, fundraising, and even advocacy. It was a minefield of information, and many booths even had giveaways that said things about being rare! It was a lot of fun to learn from each booth and discover new partnerships or services that could be had.” 

The Rare Advocacy Summit provided a platform for participants to learn from experts and industry leaders about the most effective advocacy strategies. Workshops and panels covered topics such as legislative advocacy, fundraising, and social media outreach, giving attendees valuable tools to enhance their advocacy efforts. Discussing her participation in the panel, Mindy was reminded that through her lived experience, she herself was also an expert, one that many others were looking to for insight. 

“They also had opportunities to attend panels on many topics including gene research, advocacy, community organizations, and more. I was there representing Give an Hour on a panel about Loss, grief, and diagnosis. The panels were all experts in their fields, and it reminded me that yes, I was an expert on being a rare caregiver! It was a good crowd, and I felt there were moments when I connected with the audience because they knew exactly what I was talking about and maybe had even experienced it themselves. Later many people approached me, and we further discussed the stigma, feelings, and frustrations of being a rare caregiver. It was an opportunity to belong and to share experiences. For most people, there were things we shared with one another that could become future life hacks for us. Some shared joyful stories and yes, there were some tears. Knowing you are not alone is a huge relief. Knowing there is your tribe, people just like you out there is empowering and encouraging. The conference may have forever changed many lives, and I know it impacted mine in many ways.” 

The Power of Collaboration

The Rare Advocacy Summit emphasized the power of collaboration and unity in shaping the future of rare disease advocacy. Participants left the conference inspired by the idea that, together, they can drive positive change and build a brighter future for those affected by rare diseases. 

At the heart of rare disease advocacy is the goal of building a strong and supportive patient community. The summit highlighted the importance of nurturing these communities to provide patients and their families with the resources, support, and hope they need. 

In conclusion, the Rare Advocacy Summit was not just an event; it was a transformative experience that left participants inspired and motivated to continue their advocacy efforts. By connecting with like-minded individuals, enhancing their advocacy strategies, and embracing the power of community, participants are ready to build the next generation of rare disease advocacy. 

Together, they will work towards a future where rare diseases are better understood, diagnosed, and treated, and where the rare disease community receives the support and recognition it deserves. The conference served as a reminder that when individuals with diverse backgrounds and experiences come together for a common cause, they can create a brighter future for all those affected by rare diseases. 

Ashley Keaton 
Program Manager, Give an Hour