February 2023 Newsletter

Welcome to the February Newsletter

We hope you've had a great start to the year. This month we're featuring our haemophilia resources for schools, celebrating Rare Disease Day and remind you to Save the Date for the Conference in August. We also have updated information about employment on Factored In that will be great for anyone entering the workforce.

Lastly, we have a reminder about three research studies that are currently seeking participants.                   

Read on for more.

Rare Disease Day

28 February is Rare Disease Day. It’s a day when we join together worldwide to raise awareness about what it is like to live with a rare health condition.

The theme for 2023 is Show Your Colours. Many people living with rare diseases speak of feeling isolated. Many have never met or heard of another person with their condition. Sharing personal stories is an important way to help people with rare diseases feel connected. It can also help the wider community to understand better what it is like to live with a rare disease.

For Rare Disease Day we are sharing stories from our community. If you would like to participate, please help share these stories. And if you have a personal story you'd like to share, we would love to hear from you.       

Haemophilia Resources for Schools     

Does your child have haemophilia? You may be thinking about what kind of resources you would like to educate their school. Amy Finlayson, a Haemophilia Clinical Nurse, shares her advice and ideas about resources in this National Haemophilia article.

Updated Employment Information

Getting into the workforce is a pretty exciting adventure. It might be a part-time job while you’re still studying or diving head first into a full-time job, You will start earning money, meet new people and gain new skills.

Regardless of your bleeding disorder, if you are starting your working life, it can be helpful to take the time to prepare for work and begin to think about your future career choices.

Research opportunities     

Check the HFA website for more information about three market research studies about haemophilia.
 

Do you have moderate or severe haemophilia B? Interested in making your opinion known about new treatments?

IQVIA is conducting online market research interviews about experiences of living with haemophilia B and opinions on treatment.

You will be reimbursed for your time.

Do you have haemophilia B? Or are you a carer? Are you interested in upcoming treatments?

Support and education materials for them need to be developed and your opinions would be very helpful.

White Rabbit is conducting online interviews. You will be reimbursed for your time.

Do you have haemophilia A or B? Or are you a parent/carer? What is your perspective on the impact and on the support needed?

So What Research is conducting online or phone interviews about living with haemophilia, treatment and thoughts about the future.

You will be reimbursed for your time.