Peer Chats

Histio U Final

Peer to Peer Connection

No one should have to face a diagnosis of histiocytosis alone! Whether you were personally impacted as a patient, a family member, or a friend, this journey can feel isolating, scary, and uncertain. The Histio Peer to Peer Chats provide a forum for patients and caregivers to connect as a community. In these meetings we lift one another up, offer support and compassion, and share our histio stories. While each session is focused on a particiular histiocytic disorder or patient-family group, you are welcome to join any session of interest. 

Rosai-Dorfman Disease (RDD) Support Group

Our group meets on the second Tuesday of each month from 7pm-8pm EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All those impacted by RDD are welcome to join; this group will include patients and caregivers

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

Xanthogranuloma (XG/JXG) Support Group

Our group meets on the ----- of each month from ------ EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All those impacted by JXG/XG are welcome to join; this group will include patients and caregivers

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

Diabetes Insipidus (DI) Support Group

Our group meets on the ----- of each month from ------ EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All those impacted by DI are welcome to join; this group will include patients and caregivers

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

Hemophagocytic lymphohistiocytosis (HLH) Support Groups

The CAREGIVERS group meets on the fourth Tuesday of each month from 5pm-6pm EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All those caring for a loved one impacted by HLH are welcome to join.

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

The PATIENTS group meets on the ----- of each month from ------ EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All patients managing HLH are welcome to join.

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

Langerhans cell histiocytosis (LCH) Support Groups

The CAREGIVERS group meets on the ----- of each month from ------ EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All those caring for a loved one impacted by LCH are welcome to join.

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

The PATIENTS group meets on the ----- of each month from ------ EST

The conversations are hosted by Deanna Fournier, Executive Director. There is no cost to attend.

Who should attend: All patients managing LCH are welcome to join.

Where will we meet: The meetings are hosted online using Zoom platform. A Zoom account is not required, however you will need to register in advance to join the call. The calls are not recorded and the use of your cameria is optional. Registering for one session will automatically register you for all future sessions!

Erdheim-Chester Disease (ECD) Virtual Chats

Our dear friends at the ECD Global Alliance currently offer amazing virtual chat opportunities for ECD patients and caregivers! Learn more, here!

 


IMPORTANT INFORMATION:

There will not be a medical professional assisting on any of the virtual peer to peer calls. Histiocytosis impacts every patient differently and medical advice cannot be offered in these sessions. We strongly encourage all ideas shared by your peers to be discussed with your physician and/or care team. The Histiocytosis Association designed these sessions to be open, safe, and respectful environments for all who participate. We encourage you to review our Virtual Event Participant Guidelines before joining a call. If you have any questions, contact us at info@histio.org.