Technology today is taking us to new (un)comfortable heights, at a pace few would be surprised by. For those who are living with narcolepsy, this self-piloting drone could be a Godsend. We are advancing so quickly it’s hard to keep up with what’s a fad and what’s here to stay. For patients with rare and chronic illnesses, it’s becoming increasingly important, crucial even, to stay up to date not only with the latest trends on how pharma is stepping up their game as pertains to orphan diseases and their treatments, but also on the technology being developed by the tech sector such as apps that help researchers and patient organizations.
As reported by Genetic Engineering and Biotechnology News, “NORD spokeswoman Mary Dunkle (speaking to the increasing importance of developing tools to share data) told GEN,
“Rare disease patient organizations are highly motivated to establish such partnerships. And, with patient populations that are small and scattered around the world, tools such as mobile apps that facilitate global sharing of information are potentially game-changers.”
Below is a list of apps that you can download and use today:
- Mobile Apps that help doctors diagnose rare diseases:
- VisualDx – One doctor was recognized for his use of the technology in diagnosing children with rare illnesses, as reported by CBS8 in San Diego
- Mobile Apps that bring people, patient organizations and scientists together to learn more about rare diseases through social media
- ODDT (Open Drug Discovery Teams) – as reported by the Rare Disease Report (RDR – click here for full report), “The app pulls together Twitter data based on specific hashtags, and RSS news syndication feeds. Users can contribute data by tweeting out links and using specific hash tags. Most of the data fetching is done automatically”.
- Orphanet – described as a mobile portal for rare diseases. You can see what to do in case of rare disease related emergency and locate clinics and specialists nation-wide.
- Apps for caregivers
- Unfrazzle – Unfrazzle is a time and activity management app that helps caregivers remember and track the full range of their caregiving tasks, and stay in-sync with other caregivers. This app lets tech-savvy people customize and keep tabs on several care categories at one time with unprecedented flexibility. Bonus: This app is available in multiple languages: English, German, Northern Sami, and Spanish.
- CaringBridge App – Similar to Unfrazzle, it allows it’s users to share updates and photos to keep loved ones up to date. The difference maker, The CarinBridge app has a personal fundraising option.
- MyMedSchedule – Patients and caregivers can use the MyMedSchedule App (link to iTunes app store) to manage meds and labs on the go, set reminders, and make it easier to communicate with their healthcare providers. This app can track medications and appointments, and be used to create schedules to both read and print (in English or Spanish). It includes My Health Tracker to let patients or caregivers record lab results and vital signs.
As great and powerful as these apps are, more private and public sector development and funding for rare disease technologies is needed to fill the needs of those living with rare diseases. It’s evident given the anemic/pitiful “list” the NIH has managed to publish on the page of the Office of Technology Transfer.
