NF1 Project

28/08/2025

We are still recruiting. Adults with NF1 who wish to participate should take action now. Please take this opportunity to help create better treatments for people with NF1. Visit the website https://nf1project.com

26/08/2025

Lots of people in Australia, the USA and the UK have received their kits but many people have not returned them. We understand that life gets in the way of our best intentions, but your sample is critical to the success of this research project. Please return your kit, or if you need another one, please get in touch at info@nf1project.com.

25/08/2025

23/08/2025

Three news registration. Help us make a difference. Join us in our important NF1 research project! A big thank you to Steven, McKenzie, Sabrina for joining us and contributing to this project over the past 24 hours. Your participation is crucial as we explore why some individuals with NF1 have only a few skin neurofibromas while others have thousands.

We invite all adults living with NF1 to participate whether you have just a few or many neurofibromas. Every additional person improves our understanding and brings us closer to our goal of unlocking the mysteries of NF1. Together, we can make a difference! #

The NF1 Project aims to improve the understanding of how genetics affects the number of skin neurofibromas and how to treat skin neurofibromas in the future.

22/08/2025

Let's do better for people with NF1. Research is needed to find better treatments. If you are an adult with NF1 please register online https://nf1project.com

20/08/2025

A big thank you to Kaley, Cari, Carol, Andy, Erin, Carrie, Elizabeth and Rhiannon who have taken the time to register and participate in this important project over the past 48 hours. Together we can make progress in understanding what genetic pathways influence the NF1 gene and the number of skin neurofibromas an adult with NF1 will develop. We encourage other adults with NF1 to visit nf1project.com to join this international project.

The NF1 Project aims to improve the understanding of how genetics affects the number of skin neurofibromas and how to treat skin neurofibromas in the future.

18/08/2025

RESEARCH TO HELP UNDERSTAND AND TREAT SKIN NEUROFIBROMAS. Thank you to everyone who has registered for this project! There have been five new participants in the past 24 hours. We truly appreciate your participation. Just a friendly reminder to please complete your questionnaire and return your saliva kits when you can. Contact our project officer, Elisabeth Roe if you still waiting for your saliva kit. We're working towards a goal of 2000 saliva kits, and your contribution will make a significant difference in our research. Together, we can make this effort count! Thank you for your support!

13/08/2025

Thank you to everyone who has registered for this project! There have been five new participants in the past 24 hours. We truly appreciate your participation. Just a friendly reminder to please complete your questionnaire and return your saliva kits when you can. We're working towards a goal of 2000 saliva kits, and your contribution will make a significant difference in our research. Together, we can make this effort count! Thank you for your support!

12/08/2025

We are still recruiting! We need 2,000 adults with NF1. Please consider participating in this research project to help improve the treatment of neurofibromas.

10/08/2025

Most people with NF1 will develop neurofibromas as they get older. Help our research team make progress towards finding a treatment.

Thank you to everyone who has registered for this project! There have been five new participants in the past 24 hours. We truly appreciate your participation. Just a friendly reminder to please complete your questionnaire and return your saliva kits when you can. We're working towards a goal of 2000 saliva kits, and your contribution will make a significant difference in our research. Together, we can make this effort count! Thank you for your support!

07/08/2025

We are seeking adults with NF1 to participate in a research project that aims to understand the genes influencing the development of neurofibromas. https://nf1project.com
Enrolment is online, so you can participate from home. It will take about half an hour to complete the forms and upload your photos. We will then send you a DNA testing kit so you can provide a saliva sample and send it back to us at no cost.

05/08/2025

Help us achieve our research goal at NF1project.com
Thank you to everyone who has registered for this project! There have been five new participants in the past 24 hours. We truly appreciate your participation. Just a friendly reminder to please complete your questionnaire and return your saliva kits when you can. We're working towards a goal of 2000 saliva kits, and your contribution will make a significant difference in our research. Together, we can make this effort count! Thank you for your support!

The NF1 Project aims to improve the understanding of how genetics affects the number of skin neurofibromas and how to treat skin neurofibromas in the future.