There’s a wealth of experience and empathy in the amyloidosis community, and this platform expands our ability to tap into it as never before.
SOUTH NORWALK, Conn. (PRWEB) May 14, 2019
rareLife solutions today announced that oneAMYLOIDOSISvoice.com—a free, online education community for those wishing to better understand amyloidosis symptoms, diagnosis, treatment and survival—is now live. Amyloidosis is a life-altering, incurable disease in which an abnormal buildup of amyloid protein can potentially trigger heart failure and severe damage to the nerves, kidneys and other vital organs. Amyloidosis occurs in several forms; in the U.S., new cases annually number in the thousands, while worldwide they may be as high as 13 million.
oneAMYLOIDOSISvoice aims to provide greater disease knowledge, stronger emotional support, and improved awareness of the symptoms and risk factors associated through its three core features: Trusted Resources, the Social Wall, and Diagnosis Educator, emphasized rareLife Co-Founder and Chief Operating Officer T. Anthony Howell.
“oneAMYLOIDOSISvoice also features “cybrareian” software that analyzes member discussions, finds relevant professionally vetted content in the Trusted Resources library, and inserts links to this content directly within those conversations,” Howell said.
“Pointing our members toward vetted videos, experts, news articles, and resources is one way we’ll be empowering the amyloidosis community. We serve up knowledge, not useless ads,” he offered.
Meanwhile, the Social Wall allows members to connect with others to avoid the isolation common among individuals impacted by rare diseases, Howell noted.
“The Social Wall will unite people in in the amyloidosis community,” he said, “with the common pursuit of understanding the condition and its surrounding lifestyle.”
Another challenge addressed by oneAMYLOIDOSISvoice is the need to catch the disease early and that’s where the Diagnosis Education tool is expected to be of significant value, said Dan Donovan, co-founder & CEO of rareLife.
“Some say that amyloidosis itself isn’t rare, but early diagnosis is. It’s not uncommon for a ‘masking disease’ such as heart failure to be diagnosed and the doctors look no further for the underlying amyloidosis. Greater public awareness will help promote diagnosis early enough to greatly limit amyloidosis’ life-altering effects,” Donovan suggested.
“rareLife solutions developed oneAMYLOIDOSISvoice in cooperation with providers, organizations, advocates, and patients and their families,” Donovan said. Pfizer Rare Disease—a longtime amyloidosis community partner—provided an independent education grant to fund the new platform but neither owns nor controls the platform and its content,” Donovan said.
Muriel Finkel, president of Wood Dale, Illinois-based nonprofit Amyloidosis Support Groups Inc., hailed the new platform as a vital new tool in the battle against amyloidosis.
“We’re very excited about the arrival of oneAMYLOIDOSISvoice because it increases the level of support available to patients, caregivers, families, and friends of those touched by this debilitating and frequently fatal disease,” said Finkel, whose group is the key collaborator for the oneAMYLOIDOSISvoice platform.
Amyloidosis Support Groups advisor Robert Gibson from Virginia predicted that the new platform will help amyloidosis patients and their families navigate the challenges and complexities of managing the disease. “The educational resources together with the information exchanges that will occur on this new platform will guide patients toward wiser and more informed decisions about their care,” he said.
Added Mike Will, an Amyloidosis Support Groups group leader in Texas: “There’s a wealth of experience and empathy in the amyloidosis community, and this platform expands our ability to tap into it as never before.”
“Pfizer continues our commitment to patients, advocates and caregiver communities by supporting educational platforms where there is an unmet need,” said Sonal Bhatia, MD, Vice President, North America Medical Lead, Pfizer Rare Disease. “This educational platform provides members with an innovative forum that delivers disease awareness and lifestyle resources to help them continue to advance their learning while providing a forum to connect with other members.”
Patients, caregivers, healthcare providers, and all other amyloidosis community members are invited to begin using oneAMYLOIDOSISvoice.
For more information, contact Dakota Fisher-Vance by email at dfishervance(at)rareLifesolutions.com.
Founded in 2013, rareLife solutions is the health tech, design and research team behind oneAMYLOIDOSISvoice, the onevoice modular community system, and additional customized rare disease platforms. rareLife solutions offers integrated strategic and tactical community engagement plans, medical communications and publication planning consulting services and collaborative platform as a service (PaaS) solutions for advocacy organizations, pharmaceutical and device companies, medical and research centers, contract research organizations and professional healthcare associations. To learn more, please visit us at http://www.rareLifesolutions.com and http://www.onevoice.world, follow us on Twitter at @rareLifeTalks and @onevoiceworld, join us on LinkedIn, and like us on Facebook at Facebook.com/rareLifeSolutions and Facebook.com/onevoiceworld.
Amyloidosis Support Groups Inc. (ASG) is a leading amyloidosis nonprofit organization formed in 2005 to provide amyloidosis support nationwide for patients, caregivers, families and friends of those impacted by this life-threatening disease. Since then, ASG has produced highly regarded educational materials for the entire amyloidosis community and connected countless patients and loved ones with leading amyloidosis experts at their regional meetings. To learn more and find support, please visit us at http://www.amyloidosissupport.org and follow us on Twitter at @AmyloidosisSupp.
oneAMYLOIDOSISvoice has three unique features:
1) A professionally vetted library of Trusted Resources
2) A Social Wall that provides a safe environment for community driven conversations
3) A Diagnosis Educator that provides you with information about the challenges and process of getting and giving a diagnosis
Funding for this new oneAMYLOIDOSISvoice platform was sponsored by an independent education grant from Pfizer, who wants to partner with the Amyloidosis community by providing quality resources for this community.
Pfizer neither owns nor controls the platform and does not have editorial control over content or responsibility for any other information or services. Pfizer provides financial support for this community platform.
The data that is gathered through the oneAMYLOIDOSISvoice platform is used for feedback and analysis to make this community platform even better. We hope you find the benefits of the oneAMYLOIDOSISvoice platform helpful to you and your family. To sign up for no-cost access to oneAMYLOIDOSISvoice – go to http://www.oneAMYLOIDOSISvoice.com.