Increase access to support groups and credible information in Korea with the click of a mouse

Increase access to support groups and credible information in Korea with the click of a mouse

South KoreaWashington, United States
Organization type: 
nonprofit/ngo/citizen sector
Project Stage:
$1 million - $5 million
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

Disease InfoSearch (DIS) connects individuals with hard-to-find information and other people experiencing the same difficulties.

About Project

Problem: What problem is this project trying to address?

Individuals diagnosed with a genetic condition often feel lost, overwhelmed, and isolated. These feelings are magnified when the condition is rare, as it is hard to find accurate information about the condition for both patients and providers. Individuals affected with the condition often don’t know anyone else with the same diagnosis and they don’t know how to go about searching for them.

Solution: What is the proposed solution? Please be specific!

Individuals diagnosed with a disease feel supported, informed, and empowered when they have credible information immediately following a diagnosis. Disease InfoSearch (DIS) connects individuals with hard-to-find information and other people experiencing the same difficulties. Because it is an online resource, it is more accessible than books, articles, and other print-based resources, regardless of what part of the world an individual is located. In this targeted expansion of DIS, we will partner with the Korean Organization for Rare Diseases to reach out to disease-specific support organizations in their country to help them to create a listing in DIS. This will not only allow hundreds of Koreans to create an up to date listing of their organizations utilizing a technology platform that is already created but also inform Koreans of other organizations they might reach out to around the world.
Impact: How does it Work

Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.

After working with the Korean Organization for Rare Diseases to identify the disease-specific groups they are aware of in their country, we will work with them to develop template emails to send to the group leaders. There will be two types of emails – one explaining DIS and its benefits from a disease-specific organization perspective, including directions on how to register, and a second that explains DIS from a patient and provider perspective, so we can leverage the groups’ networks to increase the knowledge about DIS among patients, their families, and providers. Ultimately this will lead to a doctor who has just diagnosed a young patient Kawasaki disease knows that by turning to DIS, he’ll have easy access to relevant medical articles for himself as well as patient-friendly materials and any applicable support groups that he can share with the patient’s family. By having a single web resource to check for both resources from his country and around the world, it allows the doctor to access the information quickly while providing personalized care to his patient.

Marketplace: Who else is addressing the problem outlined here? How does the proposed project differ from these approaches?

While there are several groups that try to maintain a list of disease-specific organizations, we set ourselves apart by using the long-tail approach of having the groups be responsible for keeping their own listings up to date. By utilizing the manpower and motivation of the groups, it is a much more sustainable endeavor. There is also no current comprehensive listing of the support groups available in Asia, so by expanding the reach of DIS to this Asian country, we will begin to fill an unmet need. Additionally, as we have been overhauling the DIS site, we have engaged several of the other organizations who overlap with this work to identify ways we can partner and collaborate because we know our shared goal is to better serve the individuals looking for quality information and support.

Founding Story

Genetic Alliance was founded by a social worker, Joan Weiss, when her son was diagnosed with a heart condition as a baby. She felt no parent should feel as alone as she did then. I learned of Genetic Alliance when my two children were diagnosed with pseudoxanthoma elasticum (PXE), and I founded PXE International, a disease group to accelerate research on PXE. As I worked to create a research consortium for PXE, I met huge obstacles created by a lack of collaboration on the part of academic and industry researchers, and so I was inspired to create a new paradigm. Disease InfoSearch was born of this passion – my premise was: if disease advocacy organizations, using a long tail aggregation approach, would collaborate in a meaningful way, then we could accelerate this timeline and build in cost efficiencies. I also knew that any work would have to be global – and I established projects in 52 countries for a variety of conditions.
About You
Genetic Alliance
About You
First Name


Last Name


About Your Organization
Organization Name

Genetic Alliance

Organization Country

, Washington

Country where this project is creating social impact
How long has your organization been operating?

More than 5 years

The information you provide here will be used to fill in any parts of your profile that have been left blank, such as interests, organization information, and website. No contact information will be made public. Please uncheck here if you do not want this to happen..

How long have you been in operation?

Operating for more than 5 years

Which of the following best describes the barrier(s) your innovation addresses? Choose up to two

Access, Quality.

Social Impact
Please describe the goal of your initiative; outline what you are trying to achieve

The goal of this phase of DIS growth is to increase the number of Korean-based groups represented in DIS and the number of Korean individuals (patients, providers, and other interested people) accessing the wealth of information contained within DIS. While the direct focus of this project is our collaboration with the Korean Organization for Rare Diseases, there will be a ripple effect of people impacted, as it is highly likely they will look outside of their geographic borders to connect with others like themselves, even if they speak a different language.

What has been the impact of your solution to date?

We have engaged more than 1,200 disease advocacy organizations to contribute information to Disease InfoSearch. Thousands of health professionals have communicated to us the importance of this resource for their patients. The men, women and children who use the resource are grateful for the one stop shopping this information provides for them.

We measure the success of this aspect of our project by the numbers of hits and the interactivity between the resource and the associated databases. In Spring 2012, we will launch a new version of DIS with more user-friendly navigation and increased connectivity with other resources.

What is your projected impact over the next five years?

Genetics is quickly moving into mainstream medicine. Because of this, it will be important for primary care physicians and other healthcare professionals to know about the plethora of resources available in a single click. Patients will not be subjected to the diagnostic odyssey. Researchers will find the right disease and cohort of individuals to match their needs quickly and easily. The individuals who use DIS will also begin to enroll in other tools of Genetic Alliance, such as the Genetic Alliance Registry and BioBank. Further, as new attributes of disease emerge with the advent of whole genome sequencing, these will be cataloged. Ultimately variation databases with mutations in genes will be associated with the clinical signs and symptoms of the disease, accelerating research.

What barriers might hinder the success of your project? How do you plan to overcome them?

Our biggest barrier related to conducting outreach to internationally-based disease-specific support groups on a large scale is the potential language barrier. However, for this project, we will be partnering with the Korean Organization for Rare Diseases which will eliminate that barrier completely. We will share template emails and phone scripts with them in English that they can then adapt to their language. An additional barrier is the funding necessary for the staff time on this project. Winning this competition will allow this to happen!

Winning entries present a strong plan for how they will achieve and track growth. Identify your six-month milestone for growing your impact

We will have 10 completely fleshed out entries searched by more than 10,000 individuals.

Identify three major tasks you will have to complete to reach your six-month milestone
Task 1

Complete development of new DIS website with full advanced search functionality.

Task 2

Develop targeted outreach materials for Korean disease-specific organizations with local collaboration.

Task 3

Outreach campaign to 20 groups, knowing that it will take time to get them all included.

Now think bigger! Identify your 12-month impact milestone

40 Disease groups entries with 20,000 hits – serving 20,000 Korean families and/or healthcare providers.

Identify three major tasks you will have to complete to reach your 12-month milestone
Task 1

Assist in distribution of materials at the Korean Organization for Rare Diseases annual meeting in 2012.

Task 2

Leadership training for the Korean support groups leaders.

Task 3

Further outreach beyond the work above - presentation at the International Conference on Rare Diseases in Shaghai, 2013.

Tell us about your partnerships

As an organization, Genetic Alliance has a network that includes more than 10,000 organizations, ranging from advocacy organizations to academia to industry. Disease InfoSearch has partnered with advocacy organizations from its inception 10 years ago. We have collaborations with about a dozen other information purveyors with agreements to use web services and other technologies to transfer information. In the next iteration of DIS, we are excited to partner with additional providers of credible information about health conditions that are based here in the United States and internationally.

Are you currently targeting other specific populations, locations, or markets for your innovation? If so, where and why?

With our revamping of Disease InfoSearch, we are strengthening the search tools to allow researchers to more easily identify support groups that are interested in partnering in research. By expanding the utility of the resource to include researchers (in addition to the healthcare providers and patients the tool already serves), more time and money can be used to carry out research that will lead to treatments and improved quality of life.

What type of operating environment and internal organizational factors make your innovation successful?

Genetic Alliance is built on a strong ‘team of teams’ culture. We understand that a hero culture is not sustainable and does not empower either organizations or communities. We empower staff to lead with their strengths and weaknesses. Projects such as this one are a manifestation of an internal culture. Further, we launch movements that enable lay people to be principals in the healthcare enterprise, and this project is a reflection of that environment.

Please elaborate on any needs or offers you have mentioned above and/or suggest categories of support that aren't specified within the list

Any project can only increase in value with increased investment and collaboration. Marketing and media will help get the word out about this incredible resource to all who could benefit from it.