I had the chance to attend the 2015 Global Genes RARE Summit and was inspired by the passion that the attendees at the summit shared. The rare disease community is clearly one in which patients, researchers, and advocates look out for and help each other. Unfortunately, this support is needed in part because they lack support outside their communities.
I was particularly struck by the extent to which awareness remains a hurdle for those impacted by rare diseases. Patients with rare diseases spend years, even decades searching for diagnosis. 5 years from symptoms to diagnosis was the norm, not the exception. Can you imagine going 5 years, knowing that something is wrong with your body but being told that there is nothing wrong or that the symptoms will pass? I certainly cannot. And yet this is the world of the undiagnosed rare disease patient.
When I came into this conference, I was unsure how WeHealth could provide the most value for the rare disease community. After meeting so many wonderful people at the summit and hearing the same diagnosis story over and over – how they felt isolated on an island and nobody would recognize their symptoms as those of a rare disease – WeHealth’s mission is now clear.
When we launch WeHealth, it will be platform for raising awareness for rare diseases. We have a passionate community of people affected by rare diseases working to raise awareness. We are working with advocacy groups to use WeHealth to get the rest of the world involved in raising rare disease awareness. WeHealth will track how spreading awareness through your social networks is having an impact, and by doing so we hope to provide a platform for everybody to help.
As we prepare WeHealth for launch, I will post spotlights on some of these rare diseases, starting with Primary Immunodeficiency (PI). This disease has a special place in my heart because I worked at Baxalta for 6 years where I helped manufacture the therapy for PI. I had the good fortune to meet Ashanthi early in the RARE Summit. Ashanthi has PI and receives Baxalta’s therapy, Gammagard. Check out her blog, Life With PI!