Accessibility Statement Skip Navigation
  • Why PRWeb
  • How It Works
  • Who Uses It
  • Pricing
  • Login
  • GDPR
  • Create a Free Account
Return to PRWeb homepage
  • News
  • Resources
  • Contact
When typing in this field, a list of search results will appear and be automatically updated as you type.

Searching for your content...

No results found. Please change your search terms and try again.
  • News in Focus
      • Browse News Releases

      • All News Releases
      • Multimedia Gallery

      • All Multimedia
      • All Photos
      • All Videos
  • Business & Money
      • Auto & Transportation

      • Aerospace, Defense
      • Air Freight
      • Airlines & Aviation
      • Automotive
      • Maritime & Shipbuilding
      • Railroads and Intermodal Transportation
      • Supply Chain/Logistics
      • Transportation, Trucking & Railroad
      • Travel
      • Trucking and Road Transportation
      • View All Auto & Transportation

      • Business Technology

      • Blockchain
      • Broadcast Tech
      • Computer & Electronics
      • Computer Hardware
      • Computer Software
      • Data Analytics
      • Electronic Commerce
      • Electronic Components
      • Electronic Design Automation
      • Financial Technology
      • High Tech Security
      • Internet Technology
      • Nanotechnology
      • Networks
      • Peripherals
      • Semiconductors
      • View All Business Technology

      • Entertain­ment & Media

      • Advertising
      • Art
      • Books
      • Entertainment
      • Film and Motion Picture
      • Magazines
      • Music
      • Publishing & Information Services
      • Radio & Podcast
      • Television
      • View All Entertain­ment & Media

      • Financial Services & Investing

      • Accounting News & Issues
      • Acquisitions, Mergers and Takeovers
      • Banking & Financial Services
      • Bankruptcy
      • Bond & Stock Ratings
      • Conference Call Announcements
      • Contracts
      • Cryptocurrency
      • Dividends
      • Earnings
      • Earnings Forecasts & Projections
      • Financing Agreements
      • Insurance
      • Investments Opinions
      • Joint Ventures
      • Mutual Funds
      • Private Placement
      • Real Estate
      • Restructuring & Recapitalization
      • Sales Reports
      • Shareholder Activism
      • Shareholder Meetings
      • Stock Offering
      • Stock Split
      • Venture Capital
      • View All Financial Services & Investing

      • General Business

      • Awards
      • Commercial Real Estate
      • Corporate Expansion
      • Earnings
      • Environmental, Social and Governance (ESG)
      • Human Resource & Workforce Management
      • Licensing
      • New Products & Services
      • Obituaries
      • Outsourcing Businesses
      • Overseas Real Estate (non-US)
      • Personnel Announcements
      • Real Estate Transactions
      • Residential Real Estate
      • Small Business Services
      • Socially Responsible Investing
      • Surveys, Polls and Research
      • Trade Show News
      • View All General Business

  • Science & Tech
      • Consumer Technology

      • Artificial Intelligence
      • Blockchain
      • Cloud Computing/Internet of Things
      • Computer Electronics
      • Computer Hardware
      • Computer Software
      • Consumer Electronics
      • Cryptocurrency
      • Data Analytics
      • Electronic Commerce
      • Electronic Gaming
      • Financial Technology
      • Mobile Entertainment
      • Multimedia & Internet
      • Peripherals
      • Social Media
      • STEM (Science, Tech, Engineering, Math)
      • Supply Chain/Logistics
      • Wireless Communications
      • View All Consumer Technology

      • Energy & Natural Resources

      • Alternative Energies
      • Chemical
      • Electrical Utilities
      • Gas
      • General Manufacturing
      • Mining
      • Mining & Metals
      • Oil & Energy
      • Oil and Gas Discoveries
      • Utilities
      • Water Utilities
      • View All Energy & Natural Resources

      • Environ­ment

      • Conservation & Recycling
      • Environmental Issues
      • Environmental Policy
      • Environmental Products & Services
      • Green Technology
      • Natural Disasters
      • View All Environ­ment

      • Heavy Industry & Manufacturing

      • Aerospace & Defense
      • Agriculture
      • Chemical
      • Construction & Building
      • General Manufacturing
      • HVAC (Heating, Ventilation and Air-Conditioning)
      • Machinery
      • Machine Tools, Metalworking and Metallurgy
      • Mining
      • Mining & Metals
      • Paper, Forest Products & Containers
      • Precious Metals
      • Textiles
      • Tobacco
      • View All Heavy Industry & Manufacturing

      • Telecomm­unications

      • Carriers and Services
      • Mobile Entertainment
      • Networks
      • Peripherals
      • Telecommunications Equipment
      • Telecommunications Industry
      • VoIP (Voice over Internet Protocol)
      • Wireless Communications
      • View All Telecomm­unications

  • Lifestyle & Health
      • Consumer Products & Retail

      • Animals & Pets
      • Beers, Wines and Spirits
      • Beverages
      • Bridal Services
      • Cannabis
      • Cosmetics and Personal Care
      • Fashion
      • Food & Beverages
      • Furniture and Furnishings
      • Home Improvement
      • Household, Consumer & Cosmetics
      • Household Products
      • Jewelry
      • Non-Alcoholic Beverages
      • Office Products
      • Organic Food
      • Product Recalls
      • Restaurants
      • Retail
      • Supermarkets
      • Toys
      • View All Consumer Products & Retail

      • Entertain­ment & Media

      • Advertising
      • Art
      • Books
      • Entertainment
      • Film and Motion Picture
      • Magazines
      • Music
      • Publishing & Information Services
      • Radio & Podcast
      • Television
      • View All Entertain­ment & Media

      • Health

      • Biometrics
      • Biotechnology
      • Clinical Trials & Medical Discoveries
      • Dentistry
      • FDA Approval
      • Fitness/Wellness
      • Health Care & Hospitals
      • Health Insurance
      • Infection Control
      • International Medical Approval
      • Medical Equipment
      • Medical Pharmaceuticals
      • Mental Health
      • Pharmaceuticals
      • Supplementary Medicine
      • View All Health

      • Sports

      • General Sports
      • Outdoors, Camping & Hiking
      • Sporting Events
      • Sports Equipment & Accessories
      • View All Sports

      • Travel

      • Amusement Parks and Tourist Attractions
      • Gambling & Casinos
      • Hotels and Resorts
      • Leisure & Tourism
      • Outdoors, Camping & Hiking
      • Passenger Aviation
      • Travel Industry
      • View All Travel

  • Policy & Public Interest
      • Policy & Public Interest

      • Advocacy Group Opinion
      • Animal Welfare
      • Congressional & Presidential Campaigns
      • Corporate Social Responsibility
      • Domestic Policy
      • Economic News, Trends, Analysis
      • Education
      • Environmental
      • European Government
      • FDA Approval
      • Federal and State Legislation
      • Federal Executive Branch & Agency
      • Foreign Policy & International Affairs
      • Homeland Security
      • Labor & Union
      • Legal Issues
      • Natural Disasters
      • Not For Profit
      • Patent Law
      • Public Safety
      • Trade Policy
      • U.S. State Policy
      • View All Policy & Public Interest

  • People & Culture
      • People & Culture

      • Aboriginal, First Nations & Native American
      • African American
      • Asian American
      • Children
      • Diversity, Equity & Inclusion
      • Hispanic
      • Lesbian, Gay & Bisexual
      • Men's Interest
      • People with Disabilities
      • Religion
      • Senior Citizens
      • Veterans
      • Women
      • View All People & Culture

  • Hamburger menu
  • Cision PRWeb provides efficient communication tools to continuously engage with target audiences across multiple online channels
  • Create a Free Account
    • ALL CONTACT INFO
    • Contact Us


      11AM ET Sunday – 8PM ET Friday

  • Send a Release
  • Sign up
  • Log in
  • Resources
  • RSS
  • GDPR
  • News in Focus
    • Browse All News
    • Multimedia Gallery
  • Business & Money
    • Auto & Transportation
    • Business Technology
    • Entertain­ment & Media
    • Financial Services & Investing
    • General Business
  • Science & Tech
    • Consumer Technology
    • Energy & Natural Resources
    • Environ­ment
    • Heavy Industry & Manufacturing
    • Telecomm­unications
  • Lifestyle & Health
    • Consumer Products & Retail
    • Entertain­ment & Media
    • Health
    • Sports
    • Travel
  • Policy & Public Interest
  • People & Culture
    • People & Culture
  • Send a Release
  • Sign up
  • Log in
  • Resources
  • RSS
  • GDPR
  • Send a Release
  • Sign up
  • Log in
  • Resources
  • RSS
  • GDPR
  • Send a Release
  • Sign up
  • Log in
  • Resources
  • RSS
  • GDPR

oneAMYLOIDOSISvoice.com Support Group Platform Begins Empowering the Amyloidosis Community with Invaluable Info About Amyloidosis Symptoms, Diagnosis, Treatment, Survival

oneAMYLOIDOSISvoice.com -- a free, online education community for those wishing to better understand and cope with the life-threatening disease amyloidosis, which occurs in several forms and annually strikes thousands in the U.S. (millions worldwide) -- has launched. oneAMYLOIDOSISvoice is expected to increase the level of support available to patients, caregivers, families, and friends of those touched by amyloidosis.


News provided by

oneAMYLOIDOSISvoice.com

May 14, 2019, 12:00 ET

Share this article

Share toX

Share this article

Share toX

oneAMYLOIDOSISvoice
oneAMYLOIDOSISvoice

SOUTH NORWALK, Conn., May 14, 2019 /PRNewswire-PRWeb/ -- 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.

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.

Post this

"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.

About rareLife solutions

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.

About Amyloidosis Support Groups

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.

About oneAMYLOIDOSISvoice

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.

SOURCE oneAMYLOIDOSISvoice.com

Related Links

http://www.oneAMYLOIDOSISvoice.com

Modal title

When the Orphan Patient Speaks, Listen
View PDF
When the Orphan Patient Speaks, Listen
In the Internet We Trust
View PDF
In the Internet We Trust
Diagnosis Educator
Diagnosis Educator
Social Wall
Social Wall
Trusted Resources
Trusted Resources
When the Orphan Patient Speaks, Listen In the Internet We Trust Diagnosis Educator Social Wall Trusted Resources

Contact PRWeb

  • 11AM ET Sunday – 8PM ET Friday
  • Contact Us

About PRWeb

  • About PRWeb
  • Partners
  • Partnership Programs
  • Editorial Guidelines
  • Resources

Why PRWeb

  • Why PRWeb
  • How It Works
  • Who Uses It
  • Pricing

Accounts

  • Create a Free Account
  • Log in
  • Contact Us

Do not sell or share my personal information:

  • Submit via [email protected] 
  • Call Privacy toll-free: 877-297-8921

Contact Cision

Products

About

My Services
  • All News Releases
  • Online Member Center
  • ProfNet
Cision Distribution Helpline
888-776-0942
  • Legal
  • Site Map
  • RSS
  • Cookie Settings
Copyright © 2025 Cision US Inc.