How to get involved.
Have your say and help make change happen.
TAKING PART IN CLINICAL research.
If you’d like more information on taking part in clinical research, there are a number of online resources you can take a look at.
Clincialtrials.gov has details of clinical research in over 200 countries. You can search by condition and country for trials that may be relevant to you, but it’s not an easy website to navigate so get in touch if you have any problems.
If you live in the UK, Be Part of Research is also a great place to get information and search for clinical research studies.
You can also speak to your healthcare provider about clinical research that may be of interest to you. Patient community groups also often have this information and may know people who can share their experiences with you.
SHARE YOUR STORY.
Everyone’s experience of living with their condition is unique. Everyone has their own story to tell. That’s why we’ve created a place where you can have your say, free of judgement, and feel part of a community. Together, we can help others feel empowered, supported, and comforted. Read the experiences shared so far.
Hayley’s story
Cheshire, UK
My name is Hayley. I’m from the North West of the UK, and I have ADHD, polycystic ovary syndrome, and chronic hip and knee pain from a serious car accident.
How has your diagnosis impacted your life?
Being diagnosed with ADHD means I’m naturally an out-of-the-box thinker. It also means I’m passionate. It’s why I’m so determined to make sure the patient voice is included in drug development — to make sure clinical research is inclusive and accessible for everyone.
How do you think organisations can be more inclusive?
By listening, really listening, to underserved communities and patients.
What’s one piece of advice you have for other people looking to get involved in clinical research?
Get in touch with Demand Diversity — we can help you understand more about your options.
SABINA’s STORY
QUAKERTOWN, US
My name is Sabina. I’m from Quakertown, US, and I have a rare condition called Fabry Disease. I’m also a caregiver for someone with Fabry Disease and Ehlers Danlos Syndrome.
How has your diagnosis impacted your life?
I was diagnosed with Fabry Disease in my teens, which led me to be passionate about educating others on the family-wide impacts of an inherited rare disease. Now, I focus on sharing my unique perspective of living as both a patient and a caregiver. I strive to use my own life experiences, including my involvement and participation in clinical trials, to support patients and industry in order to build bridges and encourage health equity and patient engagement.
Have you ever been involved in clinical research?
Yes! I was a clinical trial participant for 12 years.
Volunteer for us.
Be a part of the wider Demand Diversity team.
HAVE QUESTIONS OR NEED MORE INFORMATION?
Ready to join our mission? If you want to understand more about what we do, how we do it, and what impact it will have on you and others, just ask!