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Mar 21, 2017

Invisible Illness Data for Millions Worldwide - Q1 2017 Quarterly Report

Many thanks for donating to HHP's "Invisible Illness Data for Millions Worldwide" crowdfunding campaign. Since our last update, we have been working toward completing the initial phases of research for each of the invisible illnesses.

Our progress to date:

  • Created five preliminary surveys to identify the needs of people dealing with each of the invisible illnesses
  • Appointed new experienced professionals in marketing and product development
  • Formed a team of evidence-based medicine experts to establish our data guidelines and protocol
  • Recruited additional UX designers to develop the design of our website and display of data

The HHP team has learned a lot from everyone who participated in our initial research, and we will continue to improve our research methods.

As one of our survey respondents commented, “This is the first complete survey that I have found.” It is these comments that motivate us, and give meaning to what we do.

The next phase of our work on Invisible conditions will focus on the creation of a survey that we will conduct for Lupus. Drawing on what we learned in the preliminary survey, we will create a survey collecting information on symptoms, causes, treatments and side effects. This survey will follow the evidence-based methodology we have created with the initial crowdfunding, and will apply to all five Invisible conditions. A new GlobalGiving microproject campaign will fund this next phase of Lupus research. We will be in touch to let you know prior to its launch.

We will add Lupus as a condition in the community discussion forum alongside the release of the Lupus survey.

Your contributions enable us to continue creating the most comprehensive data collection tools to learn about the needs of individuals with invisible illnesses. We hope you will continue to support our mission to help those seeking accurate and objective information about their health conditions.

For people struggling with invisible illnesses, it often seems like no one understands. Thank you for understanding.

 

For more information about how HHP is helping to make a difference in the lives of people around the world, we invite you to visit our website at https://www.humanhealthproject.org/

Please also subscribe to our newsletter to be kept up to date on our progress. https://www.humanhealthproject.org/sign-up.html

The crowdfunding campaign is still open for donations, would you consider making another donation? https://www.globalgiving.org/projects/invisible-illness-data-for-millions-worldwide/


Yours sincerely,
Phil Harrington

Dec 19, 2016

Invisible Illness Data for Millions Worldwide - Q4 2016 Quarterly Report

Many thanks for donating to HHP's "Invisible Illness Data for Millions Worldwide" crowdfunding campaign. With your help, we were successful in raising over $5,000 and in becoming a permanent member of GlobalGiving.

With the money raised, we are:

  • Conducting research to create 5 surveys, one for each of the Invisible conditions: Crohn’s disease, Chronic fatigue syndrome (CFS), Lupus, Lyme disease, Fibromyalgia
  • Collecting information to determine the data needs of people dealing with each of these conditions
  • Recruiting focus group participants from whom we will learn more about their data needs 
  • Recruiting advocates and moderators for the HHP community site to which we will add each of these conditions in the phase 2 program
  • Recruiting product and marketing team members
  • Recruiting User Experience expert(s) to work on the display of information collected in preparation for the phase 2 program

The HHP team has learned a lot from everyone who participated in our initial research, and we will continue to improve our research methods.
As one of our survey respondents commented, “This is the first complete survey that I have found.” It is these comments that motivate us, and give meaning to what we do.

We will continue to create the most comprehensive data collection tools to learn about the needs of individuals with invisible illnesses. We hope you will continue to support our mission to help those seeking accurate and objective information about their health conditions.

For people struggling with invisible illnesses, it often seems like no one understands. Thank you for understanding.

For more information about how HHP is helping to make a difference in the lives of people around the world, we invite you to visit our website at http://www.humanhealthproject.org/

Please also subscribe to our newsletter to be kept up to date on our progress.  https://www.humanhealthproject.org/sign-up.html

The crowdfunding campaign is still open for donations, would you consider making another donation? https://www.globalgiving.org/projects/invisible-illness-data-for-millions-worldwide/

Yours sincerely,
Phil Harrington

 
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