COPD360social Community Exchange

Welcome to the COPD360social Community Exchange! The purpose of the Community Exchange is to provide our members with information on new technology, products to improve quality of life for patients and caregivers and a section to promote patient owned businesses or initiatives in the COPD space. We have also included a special section to allow community members to help facilitate new and exciting research being conducted by partner organizations developing new treatments or devices or accessing patient and caregiver needs through voluntary participation using surveys.

It is our hope that the new community exchange will enable our membership the opportunity to lend its collective voice for the benefit of millions affected by COPD.


Please review information and disclaimers on each of the Community Exchange categories by clicking on the links below.

Patient Initiatives

This section is to advertise patient/caregiver owned businesses or initiatives related to COPD. If you wish to advertise your business, products, or initiatives please email 360communitymanager@copdfoundation.org. Please provide the following information: a one paragraph description of your product or business or initiative, web site address (if available) and your complete contact information; a couple pictures would also be helpful. If your product is selected for posting you will be notified by email. Any product promising unsubstantiated claims as to suitability or results will not be approved and all approvals or disapprovals are at the discretion of the COPD Foundation.

The COPD Foundation will not be held liable in any way as to the use, safety or function or suitability of any product or service. It is the recommendation of the COPD Foundation that patients consult a medical professional prior to the use of any product or service used in the treatment or therapy related to their COPD or other comorbid conditions. Any claims resulting from any unintended consequences or results including suitability are the sole liability of the seller and NOT the COPD Foundation.

Partner Surveys

Any partner organization wishing to advertise their surveys please email 360communitymanager@copdfoundation.org and provide a short description and purpose of the survey, information on your organization and a copy or link to the survey. You must also include information as to how resulting data from the survey will be used, where the survey will be housed along with safeguards you have in place to protect patient privacy. No patient identifiable data can be attained or requested including but not limited to patient name, address, phone number, email address, names of treatment teams or facilities. You may not contact participants prior to, during and after participation for any reason nor may you ask them to contact you. Any violation of these guidelines will result in the removal of your survey and our refusal to approve any future surveys. All approvals or disapprovals are at the discretion of the COPD Foundation.

Patients or caregivers participating in the surveys do so by their own free will. If requested prior to, during or after the survey to provide any identifiable data or follow-up please do not respond and immediately email 360communitymanager@copdfoundation.org.

Products

Anyone wishing to advertise their products must first email 360communitymanager@copdfoundation.org. Please provide the following information: a one paragraph description of your product, web site address (if available) and your complete contact information; a couple pictures would also be helpful. If your product is selected for posting you will be notified by email. Any product promising unsubstantiated claims as to suitability or results will not be approved and all approvals or disapprovals are at the discretion of the COPD Foundation.

The COPD Foundation does not endorse any product or service and will not be held liable in any way as to the use, safety or function of any product or service. It is the recommendation of the COPD Foundation that patients consult a medical professional prior to the use of any product or service used in the treatment or therapy related to their COPD or other comorbid conditions. Any claims resulting from any unintended consequences or results including suitability are the sole liability of the seller and NOT the COPD Foundation.

Partner Clinical Trials

Any partner organization wishing to advertise their clinical trials must first email 360communitymanager@copdfoundation.org providing a short description and purpose of the clinical trial, information on your organization and a copy or link to the clinical trial. You must also include information as to how resulting data from the clinical trial will be used, where the clinical trial will be housed along with safeguards you have in place to protect patient privacy. No patient identifiable data can be attained or requested including but not limited to patient name, address, phone number, email address, names of treatment teams or facilities. You may not contact participants prior to, during and after participation for any reason nor may you ask them to contact you. Any violation of these guidelines will result in the removal of your clinical trial and our refusal to approve any future clinical trials. All approvals or disapprovals are at the discretion of the COPD Foundation.

Patients or caregivers participating in the clinical trial do so by their own free will. If requested prior to, during or after the clinical trial to provide any identifiable data or follow-up please do not respond and immediately email 360communitymanager@copdfoundation.org.


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Learn your risk for Alpha-1


If you have COPD, now there is more you can do and know. The FDA recently cleared a new, free* and easy way to discover your risk for a condition called alpha-1 from the comfort of your home, with the AlphaID™ At Home Genetic Health Risk Service.

If you would like to learn your risk through this service from Grifols and provide feedback about your experience with the service, we'll ask you to share via a short survey. First, let us tell you more about the service.

This FDA-cleared service includes the AlphaID At Home Saliva Collection Kit and detects 14 variants in the SERPINA 1 gene linked to AATD with at least 99% accuracy. The kit, postage, and lab processing are all free. No payment or insurance information will be required at any time. Your personal information is kept confidential and will never be shared with anyone.

To participate, you must be diagnosed with COPD and have internet access via a smartphone or computer.

Here are the steps to discover your risk using the service and provide feedback via a Grifols sponsored survey: Note, if you are not already a COPD Patient-Powered Research Network member, you can register here: www.copdpprn.org

Please log in to your portal and indicate that you wish to move through this process and complete the following steps:

  • Order your free AlphaID At Home Saliva Collection Kit
  • Collect your saliva sample and mail it to the lab
  • Read your confidential AlphaID™ At Home Genetic Health Risk Service Report, available on a secure, HIPAA-compliant website
  • • Complete a feedback survey about your experience to help others

Disclaimer: *The AlphaID At Home Genetic Health Risk Service, including the kit, is provided for free and may not be billed to patients or their insurers. There is no obligation to purchase or use any product or service offered by any manufacturer.

Categories: Patient Initiatives

The O2 Clip - Breathe Comfortably


The O2 Clip fastens a medical oxygen hose to a person’s shirt which allows the user to adjust the tension of the hose around the ears eliminating chafing and irritation. You can walk around pulling 30’ of hose and the hose won’t slip or pull off the ears allowing it to rest comfortably just off the ears. Also, the hose won’t twist up under the chin and is simple to adjust.

Suggested retail is $14.50

For more information or to purchase contact:
Buck-RCI@comcast.net
Or by mail to:
Peter Buck
112 Chestnut
Leadville, CO 80461

Categories: Patient Initiatives

Oxygen Tank and Portable Oxygen Concentrator Totes


Oxygen Tank and Portable Oxygen Concentrator Totes

These portable oxygen concentrator (POC) totes and oxygen tank sleeves provide a little style with your oxygen. They are made of 100% Acrylic yarn and are machine washable. The strap is thick and soft for more comfort when worn over your shoulder. A pocket provides a place to carry an inhaler, spare cannula, keys or cards. A strap goes across the top to keep the POC secure in the tote and buttons over the pocket to keep what is in the pocket, there. For under $20.00 you can get a little style with your oxygen.

Cheryl's Crafty Corner by CherylsCraftyCoStore

Categories: Products

Remote Controlled Oxygen Hose Reel


The Oxy Tube Remote (OTR) is a light-weight, portable, remote controlled oxygen hose retraction device designed to help those on oxygen therapy more easily and safely manage their long oxygen tubing. The OTR is designed to help prevent oxygen tube kinks and snags and the very real threat of falls and trips. The device retracts OR dispenses your oxygen tubing into a small container of your choice, and it does this at a speed you select. The device is controlled by a small hand-held 2 button remote: one button causes the device to release tubing as you walk away from your concentrator; push the other button to collect and retract your tubing as you walk towards your concentrator. It couldn’t be simpler. For pricing information, as well as instructional videos and purchasing, please visit our website at https://www.oxygenmgmtsystems.com/. Also, for a $5 off discount, enter the coupon code “COPD5” at checkout.

Categories: Patient Initiatives