September 30, 2015
New SERMOheroes Program Helps Patients with Rare Diseases Benefit from Medical Crowdsourcing
NEW YORK — SERMO, the leading global social network for physicians, and Global Genes™, a leading rare disease patient advocacy organization, announced at the 4th annual Rare Patient Advocacy Summit this weekend that they are partnering to provide patients with unprecedented access to hundreds of thousands of physicians from around the world who may be able to accelerate their diagnoses and treatments through medical crowdsourcing. Medical crowdsourcing on SERMO allows doctors to benefit from the wisdom of their peers by creating a mechanism for them to ask for help and receive responses instantaneously from doctors around the world at no cost.
According to Global Genes, it currently takes an average of over seven years to accurately diagnose a rare disease and most patients are misdiagnosed multiple times in the process. Medical crowdsourcing will help drastically reduce these challenges and accelerate proper diagnosis.
“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.”
As part of the partnership, SERMO is launching a new program called SERMOheroes, which will allow patients and their families who are working with Global Genes to have their cases submitted to SERMO for advice on diagnostics and treatments for free. Since SERMO is a physician-only community, patients’ whose physicians are not members of the social network will be paired with a SERMOhero, a physician who has agreed to liaise with the SERMO network of nearly 400,000 doctors on their case and relay their advice.
SERMO is creating a Rare Disease Hub on the network to house SERMOheroes patient cases. The Hub will also feature educational resources from Global Genes so physicians can learn about rare diseases, original articles from SERMO physicians about their experiences with rare diseases and new research about them, a video library and poll questions that capture physicians’ opinions. All rare disease content on SERMO will now be curated in one place.
“Medical crowdsourcing is revolutionizing medicine and is especially important when it comes to rare diseases that your average doctor does not see in day-to-day practice,” said Peter Kirk, CEO of SERMO. “We are proud to be connecting patients with rare diseases and their families with SERMO physicians for the first time so they can quickly benefit from the experiences and medical wisdom of doctors from around the world. SERMOheroes will make these patients’ lives better, providing them with hope for a healthier tomorrow. By providing this service for free, SERMOheroes will also reduce some of the medical costs associated with diagnosing and treating a patient with a rare disease.”
A recent Global Genes survey of patients, family members, physicians and allied health care professionals (HCPs) published in The Journal of Rare Disorders (JRD) identified a significant level of physician interest in helping patients with rare diseases and a compelling need for additional physician education and referral programs in rare diseases.
“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.”For more information about rare diseases and the SERMOheroes program, please check out our infographic at http://www.sermo.com/assets/pdf/Rare_Disease_Infographic_finalv2.pdf.
SERMO is the leading global social network for physicians - the virtual doctors’ lounge and the home of medical crowdsourcing - where doctors anonymously share their true feelings about their profession and lives and talk ‘real world’ medicine. SERMO has nearly 400,000 fully verified and licensed members and is now available for doctors in seven countries: the US, UK, Canada, Australia, South Africa, Ireland and New Zealand. Founded in 2005, SERMO's mission is to unite physicians and provide them with a safe, private and trusted platform for free and open discussions. SERMO harnesses the collective wisdom of doctors, enabling medical crowdsourcing, knowledge sharing and thus the advancement of medicine.
About Global Genes
Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.
Randi Kahn, Public Relations Manager, SERMO
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Ashley Eckenweiler, The ACE Agency, Public Relations, Global Genes
Cassidy Lawson, Racepoint Global
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