As so many who have come before, have already established, the inclusion of the Rare Patient Advocates and their voices are vital to the future of the Rare Disease Community as on the whole. For it’s these organizations that are often the thread that weaves together the medical communities, research, education awareness and even the emotional and mental wellbeing of the advocates, patients and their caregivers. These are the groups that often help those feeling unheard, marginalized and isolated feel connected, seen and heard.
Rather than list the myriad of benefits our communities and the community as whole receives from the inclusion of patient advocacy organizations, let me share with you what word comes to mind when marrying Patient Advocacy and Inclusion.
HOPE, Yes, HOPE. First and foremost, HOPE means Hearing Other People’s Experiences. As we come together in the true essence of Community, We grow through Hearing of the experiences and journey’s of others. Our journey’s may differ greatly, there are however, many common themes throughout the rare disease communities. Many of these center around isolation, uncertainty, long diagnostic odyssey’s, long arduous battles with medical insurance not to mention the barriers so many of us face from medical care to community services such as schools, transportation and employment.
In spite of these challenges, HOPE still comes to the surface for me, as I also see the common themes of LOVE, COMPASSION, GRATITUDE and COMMUNITY.
For today, at this moment, I want to focus on this inspirational message and how patient advocacy groups are helping people not merely survive but Thrive. You may be wondering why in face of all the challenges we buttress against, is Hope one of the first words that comes to my mind when thinking of my own diagnostic and medical journey?
I have Hope because, for the first time in my 30 plus years, in the medical advocacy arena, our stories, that is the stories of patients and their caregivers, are being heard and included. They are being given an unprecedented weight and the likes of which we have never seen before. Long gone are the days in which our voices were only heard in support groups and on social media. Instead, our voices are being heard in all aspects of life, from the classroom to the boardroom. Our journey, voices and experiences are taking front and center in educational, academic and legislative platforms. They are even beginning to crop up in the movie and tv industries.
More so, than ever before, newly diagnosed individuals and those yet to be diagnosed are being able to connect with communities that provide access, education, mentorships and yes, even Hope. Hope for increased awareness, hope for increased inclusion and best of yet, Hope for increased quality of life.
This message of hope was something I sorely lacked over 30 plus years ago, when my own diagnostic journey began. Although, as I was so recently reminded on a zoom call with the Global Genes Rare Compassion Project, the overwhelming rare disease patients still feel unheard, facing uphill battles from employment to accessing medical care and often, all too often, are still their own quarterbacks or the quarterbacks of their loved ones. We are also coming together in unprecedented ways. Ways in which we inspire, empower, uplift and educate one another. Through our shared vision of inclusion and desire to create a better world for tomorrow, we are leaning in more so than ever before to come together through communities, connections and collaborations.
I leave you with this …. We Hope for a future of inclusion, of being heard and seen. A future of HOPE in which our families need not be in fear of the unknown and of the overwhelming challenges created by our complex medical conditions but rather in HOPE of future collaborations that will help us enhance our quality of life today and dare to dream of treatments on the horizon that will allow us to lead our Best Life!
* Rare Compassion Project is a program run by the Global Gene’s Foundation that pairs rare disease patient advocates with medical students. Together we strive to share our journey’s and experiences in the furtherance of deepening our communication skills and experiences with our student partners.