Project Overview

Based on the experience as a volunteer at a rare disease community as well as a family member of a rare disease patient, I found gathering info on rare disease has been a bitter experience due to some info pitfalls. It leads to a major pain point of rare disease–to get diagnosed. The online search results doesn’t match the efforts that have been devoted, and this adds extra mental burden to the people who’s lives are already impacted by rare diseases.
Crare wants to offer promising online searching experience for people among rare disease community to prevent extra mental burden.

Design Process

Background and Gaps

How many people affected by rare disease?
Why existing info gathering experience need to change?

And, how might we….

Based on China’s 1.4 billion population, rare diseases prevalence population is 3.5–5.9% which is approximately 49–82 million people, and people who are close to patient like family members, and the potential patients are also impacted. (Orphanet
Pitfalls such as info scarcity, obsolescence, disinformation, even frauds made the info gather experience an emotional roller coaster. And this add extra mental burden to the situations such as extremely long diagnose journey, hard to cure, exorbitant orphan drugs, etc. for the rare disease community. 
Offer a promising online info gathering approach for the rare disease community? Since the existing info gathering approaches do not pay off to invested efforts due to pitfalls such as info scarcity, obsolescence, disinformation, etc.

User Research / Zooming in on how the rare disease community is gathering information.

I conducted semi-constructed interviews with rare disease impacted people to further understand who are the users and how they gather related info, what info they are looking for, etc.


换成图和字Interview Glimpse

-Who are the users? & what information they are looking for?

Through interviews, I learnt what kind of information that rare disease community are looking for, and who are looking for them specifically.
Potential Patients
Trying to get diagnosed. Diagnosis for rare disease could be very hard due to the lack of specialized doctor.
Diagnosed and experiencing the rare diseases.
Some diseases happen early, while some deprive mobility and recognition. So patients’ family members are usually the carers.

How users are using current platforms to gather information?

Stage 1

Existing Content
Vague info

Stage 2

a. community on instant communication apps
Live conversation
Real person with experience &knowledge 
b. community on specific rare disease-related platforms
Specific info 


Through user research, I discovered several insights including frustrations and patterns that exist within the process of gathering info for rare diseases.
At the Scope of how Info Gathering Experience affect users. 
At the Scope of how existing platforms working for Info Gathering.

User Persona| A projection of different types of users.​

User Journey Map |Visualize the emotional rollercoaster and find out what I can do.

Design Content | Starting to applying in research and insights onto design. 


Iterations while design

How to achieve the goal of protecting users from negative emotions  triggered by sad posts?
Censorship and reminder are the 2 approaches came to my mind when designing to protect users from negative emotions  triggered by posts. 
However, to maintain users rights the express their true feelings. I think reminder is a better approach instead of removing or not allowing posting. 
How users can introduce themselves to others while talking?
During the interview I learned that users will need to introduce their situations to others over and over again each time they talk to others. In this way I decided to add a small feature to help them avoid the repetitive work.
Tag user identities to  make it easier for users to identify each other, so they can have the idea who may share the same experience with them .
Identification is helpful for socializing and categorizing content, so I decide to apply identifications to users.

Userflow|In an ideal situation, users should follow the framework below:

Final Deliverable

User Test

User A mentioned that there can be an option to turn off the sensitive content reminder before posting.
User B has a concern for privacy, she doesn’t really want to indicate her details in her profile. Meanwhile, she also pointed out that the symptom and medication references is not really neccensary, since the details should still be noted by doctors’ advice. 

Potential Solutions

Maybe a switch could be added to turn off the reminder.
Maybe the profile can be customized a bit more based on users’ preference, so they can decide whether to include the details or not.

Further thoughts

I realized that my bias might influence my design decision. I only saw the side that I believe users need as much as information as possible, but ignored the fact privacy should be designed with care.