An Online Community for Patients and Families

We hope this community will be a source of support and empowerment for all patients and families.

Since launching this community, we have received feedback from many of you about ways to improve and make it more accessible. Thank you! We will be launching changes to the community in July 2019 and will email existing registrants with details to help you move to the improved system. In the meantime, go ahead and explore this online community and help others in their journey with HCL.

What is the HCL Patient community?

This is an online community of patients and family members affected by hairy cell leukemia. Through this portal, we hope you will ask questions and share your own experiences with HCL.

How can I join?

The button at the bottom of this page will take you to the online community. You will be asked to register to participate and view the discussion. Registration is easy. You can register by creating a user name and password, or sign in using Facebook or Twitter. (If you participate using social media, your Facebook or Twitter avatar will be visible to other users.)

When creating your password, keep the following in mind:

  • Your password should not contain commas;

  • Minimum length is 6 characters; and

  • Maximum length is 12 characters.

Is there only one group?

Yes, we have launched the community with one group to start. As participation grows, we will gauge interest in other groups such as one for women with HCL, recently diagnosed patients, or recently relapsed patients.

Is this portal monitored?

Yes, we will monitor the community to ensure a respectful and supportive platform for all participants. Inappropriate or disrespectful language will not be tolerated and individuals who abuse this platform will be removed. This community is for individuals affected by hairy cell leukemia to connect with others. Posts that promote products or businesses, whether or not they are health care related, will be removed.

I’m having difficulty registering or have other questions. Who can help me?

If you are having issues loading the online community, consider the following possibilities:

1. Your browser may be outdated. Check your browser’s settings to make sure it is updated; and

2. JavaScript may not be enabled in your browser. Check your browser’s settings to make sure JavaScript is enabled.

3. Make sure you followed the password guidelines as described above (No commas, minimum length of 6 characters, maximum length of 12 characters).

If you are still experiencing issues, contact the Hairy Cell Leukemia Foundation at info[at]

The button below will direct you to the patient community, where you can register and sign in.