Rare disease patients often report feeling lonely and isolated due to the lack of understanding surrounding their disease. Patients are sparsely located all over the world and it can be difficult to identify and connect with other patients. This is why we work hard to bring patients together! One way of doing this is through online communities, where users can connect with other patients, share experiences and learn from one another. In this week’s blog, we highlight two online platforms that have their own AKU community.
Here, at the AKU society we are very active online. We post regular blogs and have profiles on Twitterand Facebook to keep supporters updated on our work, encourage patients to engage online and raise awareness of AKU.
We also have specialist communities, where we encourage those affected by AKU to engage with other patients, discuss problems and track the progress of their disease. These communities are set up and moderated by patient advocates, ourselves, and dedicated teams with knowledge of AKU. They are more private and secure than Twitter and Facebook, meaning you can discuss problems without having to worry about who is going to see them.
Patientslikeme
Patientslikeme is a free online patient network that helps people living with diseases improve their lives. It is a fantastic platform to connect with patients from around the world, and the great thing about Patientslikeme is that you can also track your own health. Patients using the platform are encouraged to input symptoms, mood and quality of life and track their progress over time.
The AKU Society have partnered with Patientslikeme to create our own AKU community, where there are currently 144 followers. Patients using the platform have reported how amazing it is to see so many other people with AKU. This gives patients the opportunity to really engage with other patients who share many similar experiences, reducing the sense of isolation that is commonly reported in rare disease groups.
We also run special forum weeks on Patientslikeme, where guest experts are invited to answer patients’ questions on a specific theme. We held two successful forum weeks last year: a mental health discussion week in March and a medical expert forum week in September. Keep your eyes peeled, as we plan to arrange another special forum week for early next year!
Patientslikeme are always looking for new ways to improve their patient services and have recently set up a team of patient advisors. These 14 patients will give their perspective on a topic which is central to everyone in the healthcare system: how to redefine patient partnerships. The ultimate goal of this patient advisory group is to empower patients and establish new ways for people in the healthcare industry to connect with patients to deliver better care.
Rareconnect
RareConnect is an online forum for rare diseases, created by Eurordis (European Rare Disease Organisation) and NORD (National Organisation for Rare Disorders). It was created to provide a safe space where individuals and families affected by rare diseases can connect with each other, share experiences, find information and reduce the isolation of living with a rare disease.We have our own
AKU community on RareConnect, where AKU patients and families can connect and have conversations across continents. The great thing about RareConnect is that there is an option to have your message translated by a human translator, meaning you really can connect with people from all over the world! The AKU Society have identified over 1,000 patients throughout the world, many of whom receive little or no support, as medical professionals in their country have never heard of AKU. This makes connecting with other AKU patients even more critical and RareConnect is a fantastic platform to do this on.
The AKU society post regular updates on RareConnect, along with video updates and patient stories. We encourage patients to ask questions on the platform, as we have regular contact with AKU experts and are very happy to consult them on any questions patients have. We also organised an AKU webinar that took place on RareConnect in July. The webinar was designed to give AKU patients and families an update on our DevelopAKUre trial and patients from around the world tuned in to ask questions.
Patientslikeme and RareConnect are really fantastic platforms where AKU patients and families can connect with other patients in a secure, safe environment. Patients can set up their own accounts for free and it is a great opportunity for patients and families to share experiences and learn from one another!