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  • Publish Date: Posted about 1 year ago
  • Author: Steve Twinley

Did you know that 1 in 17 people has a Rare Disease?

Each of the diseases themselves may be “rare”, but there are actually far more people in every community who have a rare condition than you might think. In fact, around 300 MILLION people across the world have some form of Rare Disease (3.5 million in the UK alone).

We are so passionate at Next Phase about supporting the Rare Disease community. Many of our clients are involved in the research & development, production and supply of treatments for rare conditions. We therefore have the privilege of speaking every day with incredible people who contribute to life-changing and life-saving therapies for patients around the world. In addition, our chosen charity for 2023, Action Medical Research, conducts incredible work to support children born with rare diseases.

We have also been joined by some of the leading figures in the Advanced Therapies community on our 'Placing People First' podcast over the last year. On this page you can watch / listen to conversations with people such as Sheela Upadhyaya (who has over 20 years' experience of helping the advancement of rare disease treatments and optimising how they make it into the clinic) and Stefan Lukianov (who founded a bioengineering software business to help reduce treatment access times for rare disease patients).

By painting our faces and hands on 28th February 2023, we are joining thousands of others around the globe who are marking Rare Disease Day, raising awareness for the 300 million people worldwide living with a rare disease, as well as their families and carers. The key message is “Share Your Colours”!

Here are some other facts you may not know about Rare Diseases:

- A disease is ‘rare’ when it affects fewer than 1 in 2,000 people.
- Over 6,000 conditions have been defined as a Rare Disease so far, but misdiagnosis is common
- 72% of rare diseases are genetic
- 70% of those genetic rare diseases start in childhood
- The long-term cause of the RareDiseaseDay campaign is to achieve fair and equitable access to diagnosis, treatment, health and social care and social opportunity for people affected by a rare disease

Do you have the passion and skills to join an organisation that is contributing to the development of treatments and care for the Rare Disease community? Then get in touch to discuss potential career paths that you might not have considered.

To learn more about #RareDiseaseDay, visit

To learn more about Action Medical Research, our chosen charity for 2023, visit Our next big fundraising activity is to hike from Hove to Arundel along the South Downs Way in September 2023 - to make a contribution please click here!