This campaign is initiated and funded by Takeda.


ALTHOUGH RARE DISEASES ARE INDIVIDUALLY RARE, THEY ARE COLLECTIVELY COMMON. AFFECTING MORE OF US THAN MOST PEOPLE MAY REALISE. BE IT A LOVED ONE, A FRIEND, A COLLEAGUE, OR EVEN YOURSELF.

Research demonstrates that 1 in 17 people in the UK will be affected by a rare disease at some point in their lives. This amounts to 3.5 million people in the UK.¹ For individuals affected by rare disease, getting the right diagnosis is one of the most significant challenges, taking an average of over 4 years to receive, with some never receiving one at all.¹,²

You and your fellow healthcare professionals may, in some cases, be the first port of call in what could be a life-changing journey towards diagnosis and receiving the right care.

With over 7,000 rare diseases officially recognised,² finding an accurate diagnosis and providing the subsequent care is no mean feat. Your time is stretched, information sometimes sparse and answers not always clear. And that’s why we want to help.

We’re reaching out to healthcare professionals, like you, to share information on rare disease – to encourage you to keep it front of mind for when you see someone and aren’t quite sure what might be wrong. In collaboration with charity Medics 4 Rare Diseases, we’d like to invite you to take part in Rare Disease 101; a fast, free, online programme that provides simple information and case-study led education so you can help to Find the 1 in 17. The programme has been created by experts from the rare disease community, who understand the medical education system and the huge daily pressures you face.

Rare Disease 101 was developed by Medics 4 Rare Diseases, who hold full editorial control of the content. Takeda regularly checks the content of Rare Disease 101, but has not been involved in its development or provided any editorial input. Healthcare professionals registering for and taking the training do so independently.

The first medical education training of its type, Rare Disease 101 will support you to:

  • Recognise when someone might have an undiagnosed rare disease
  • Quantify the cost of being undiagnosed and the benefit of having a diagnosis
  • Appreciate the impact of having a rare disease on the patient and their family
  • Understand how you can facilitate the patient’s journey through the healthcare system

Join the free course

While 1 in 17 people are affected by rare diseases and countless healthcare professionals are essential in treating and supporting them, it takes just one person to think differently which could lead to an accurate diagnosis and help improve someone’s life dramatically.

That one person could be you…

FIND OUT MORE.
HELP US TO FIND THE 1 IN 17.

Meet the HCPs

Across the next few weeks, we’re pleased to be introducing you to four members of the healthcare professional community who, in support of the campaign, are providing their own unique experiences of rare disease.

Shanali Perera

I was training as a rheumatologist when I first started to experience symptoms, so it was a very strange experience for me to personally be going through the journey of the condition I was specialising in…

Read more

Meet the artist: Shanali

We launched I am number 17 in 2020 with a series of artwork that depicted the experiences of 17 people living with a rare disease. For this next phase of the awareness campaign, artist Shanali Perera will be creating a new piece of digital art that will visually showcase rare disease from a healthcare professional perspective. Shanali, not only is a talented artist, but a medical professional who had to retire from clinical practice due to her condition. As a rare disease campaigner, she will also be sharing her own personal experience of living with a rare illness as part of the campaign.

She uses the digital medium to create intense personal moments by objectifying emotions. Her work navigates the concept of creating dialogic canvases to spark conversation, provoke thought around identity and illness and help to understand illness visually.

PHASE 1: EVOLVING FOCUS

This piece shows you the hidden realities of the lived experience of rare disease. To help recognise and appreciate the vulnerability and the isolation. As well as, the impact on a person’s image, identity, and lifestyle. Helping to bring the sometimes invisible lived experience of people with rare disease front of mind.

Healthcare professionals are essential in diagnosing, treating, and supporting the 1 in 17 people affected by rare disease. That’s why we are inviting you to take part in Rare Disease 101*; a fast, free, online training programme to help keep rare disease front of mind.
*Rare Disease 101 was developed by Medics 4 Rare Diseases, who hold full editorial control of the content. Takeda regularly checks the content of Rare Disease 101, but has not been involved in its development or provided any editorial input. Healthcare professionals registering for and taking the training do so independently.
#IAmNumber17

This campaign is initiated and funded by Takeda and supported by:

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