For many patients with rare diseases* and those that care for them, low disease awareness due to their rarity, and lack of patient insight can be huge barriers to a swift or any diagnosis. For many, early diagnosis is critical to a better life expectancy and quality of life.
Too often the road to diagnosis is a long process, involving multiple clinical centres, specialties, investigations and clinicians and the process can be complicated and rarely joined up due to a lack of knowledge and information.
Kanga Health has been working for over 7 years with a number of leading pharmaceutical companies to help shorten the time to diagnosis and help provide communities and online support for those living with rare diseases. Through the work we’ve delivered across various rare diseases (NETs, Acromegaly, CLN2, FOP, NMOSD, aHUS, PNH, SPIGFD to name just a few) we help more people, especially patients have more meaningful conversations with their healthcare professionals to support their journey from symptoms to diagnosis, to managing the condition.
Kanga’s USP is to work with patients, carers and HCPs to create digital solutions that are created by patients for patients. Here are a couple of our rare disease sites of note:
- https://www.livingwithnets.com/ – LivingwithNETS is a complete support solution for people living with a rare cancer. This website was awarded “Most valuable Patient Initiative by Eyeforpharma
- https://www.acromunity.com/en-us/ – Acromunity is a website and series of content providing information for patients with a rare growth hormone condition. To date, over 100,000 unique visitors have been reached.
Our approach is to use a Patient-Driven Insight Process to help change people’s lives with rare diseases. We co-create with patients and supporters to understand the patient journeys, key milestones and ‘if only’ moments, involving patients and their carers from the outset to truly reach unmet needs. Whilst this is happening, we have the incredible opportunity to listen to patients and connect people together in what can be a lonely and isolating journey.
The work we do facilitates meaningful conversations to dig deeper into how digital solutions can help both patients and HCPs.
Kanga is proud to support Rare Disease Day and would like to thank all the wonderful and courageous patients we have co-created with over time. We look forward to continuing our work with you and hope that we can keep adding value and improving your journeys.
If you are currently working in rare diseases and looking for digital marketing support, or need help with a brand or therapy area that needs some digital inspiration please feel free to get in touch.
Rare Disease Day
RDD is an awareness day organised by Eurordis that takes place each year in February. The first Rare Disease Day was in 2008 on 29th February – a ‘rare’ date that only happens once every four years. Since then, RDD has been held on the last day of February each year. The main objective of the day is to raise awareness in the general public and decision-makers on how rare diseases affect patients’ lives.
Rarediseaseday.org created a video to share which shows how rare diseases can affect people’s lives and what difficulties they have to face. Please spare a few minutes to watch and visit the Rare Disease Day website to see how you can help.
*1 in 20 people live with a rare disease at some point in their life. With over 300 million people living with a rare disease globally, and they are the ones that have one of the 6000 identified rare diseases. (Rarediseaseday.org, 2020)
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