We are so excited to launch a new hub in the community today and a new program to connect SERMO members with some of the patients who need them most – patients with rare diseases. Patients with rare diseases and their families often feel alone, frustrated and scared. Some of them have seen many doctors and have had many, many tests, but their diagnoses and treatment options remain in the gray zone. That’s where the power of medical crowdsourcing come in.
Today we launched a new partnership with Global Genes, a leading global rare disease patient advocacy organization, to help connect some of these patients with a SERMOhero who can post their case to the network so they can benefit from the collective insight of our members. We will be posting one to two cases a month through the SERMOheroes program to help expedite the accurate diagnosis and treatment for these patients in need.
“Rare diseases are just that: rare,” said Teri Willochell, an internal medicine specialist and SERMO member. “Physicians don’t see them frequently and very few doctors have experience with them. The partnership between SERMO and Global Genes will create an extraordinary tool for doctors – connecting physicians with experience with these diseases with doctors who may not have that knowledge to medically crowdsource and solve these tough cases faster.”
On the network, the posts will live in patient cases and in the new Rare Disease Social Hub which can be navigated to under the “Learn” drop down menu. The Hub will also include information about rare diseases and genomics and will feature columns from some of our community members.
“Patients living with rare diseases visit upwards of 7 to 10 physicians before receiving an accurate diagnosis,” said Nicole Boice, Global Genes Founder & CEO. “The SERMO-Global Genes Rare Disease Hub provides an important new opportunity for physicians to connect, collaborate and learn about rare diseases to speed up the diagnosis process and improve upon patient and family care. We are thrilled to be able to partner with SERMO to bring this critical new resource to the medical professional community.”