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.
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.
-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.
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?