Pulmonary Langerhans Cell Histiocytosis - PLCH

07/08/2024

Do you have Pulmonary Langerhans cell histiocytosis (PLCH) AND Pulmonary Hypertension?

Tomorrow, we are hosting a webinar on the connections between PLCH and Pulmonary Hypertension. The ways they overlap, shared causes, and more.

We will be joined by Dr. Hillary DuBrock and Dr. Jay Ryu from Mayo Clinic in Rochester Minnesota.

Join us to learn more about the connection between these two conditions.

The webinar is free, but registration is required: https://us02web.zoom.us/webinar/register/WN_lrtJu2a9T7GFgiEierXUTw

04/03/2023

Final call for registration for the new grief support group call starting tonight at 7pm ET (Please register by 3pm ET).
https://us02web.zoom.us/webinar/register/WN_vlc2m76tQNanbsZKh30b-A

We will be hosting grief support calls at 7pm on the first Monday of April, May and June with Don Eisenhauer from Coaching at End of Life. You can watch the grief webinar we did with him last month to learn more about him: https://www.youtube.com/watch?v=dtj2G1u8Mmw

07/28/2021

This month's Beyond The Diagnosis Podcast is now available! Check it out at www.histio.org/beyondthediagnosis or any of the major podcast streaming services.

In Episode 6, Kathy sits down with histio patient, Carol Fragoso, as she shares her inspiring story of accepting and overcoming the obstacles that histiocytosis has caused in her life. It is a story of hope, encouragement, and paying it forward.

07/12/2021

Since the rollout of vaccines in 2021, vaccination rates in the USA have climbed dramatically, while new cases of COVID-19 have decreased steadily. At the sa...

06/15/2021

05/25/2021

Check out our new website and let us know what resources you'd like to see more of as we continue to update it.

Did you hear?! We've launched a brand new website! If you haven't checked out www.histio.org in a while, we invite you to check out our new and improved design and resources! This new website will enable us to provide you with more tools to help you navigate a histiocytic disorder diagnosis.

More updates and new information will regularly be added, particularly in the next few months, as we continue to evolve the site! We hope you find it helpful and easy to navigate. And as always, your feedback is important in making sure we get you what you need. Tell us what you love and what areas you hope we add more to over time.

03/01/2021

We are excited to share the National Comprehensive Cancer Network® (NCCN®) - an alliance of leading cancer centers - announced today the publication of new NCCN Guidelines®. These clinical practice guidelines provide the latest evidence and expert-consensus for diagnosing and treating the three most-common forms of histiocytosis in adults: LCH, ECD, and RDD. The guidelines can help improve the quality of care received by patients and spread awareness for histiocytosis across the medical community.

Learn more about the guidelines and how to access them at www.histio.org/NCCNguidelines

*Although the guidelines are focused on adults, pediatric physicians may find helpful information as well. If seeking care outside of the US, be sure to consult with local healthcare professionals about coverage and availability of treatment methods.

02/08/2021

Join the Histiocytosis Association in our advocacy work! The Association participates in several Community Congresses to propel forward changes to policy and law for rare disease - and you can help! The Young Adult Representatives Leadership Academy is a series of online courses offered to a select group of young adults in the rare disease community (ages 18-29). Learn more and apply at https://everylifefoundation.org/.../yarr-leadership-academy/

Welcome to The YARR Leadership Academy, a series of on-line Courses offered to a select group of young adults in the rare disease community (ages 18-29). Academy students will learn about the roles and opportunities for patient representation in policy making, drug development and the regulatory pro...

02/01/2021

Join us for the next webinar in our virtual education series - Histio Patient Needs: A Focus on the Eyes and Vision.

Co-hosted with our friends at the ECD Global Alliance, this webinar will address the most common concerns about eye care and vision associated with a histiocytic disorder and/or the effects of treatment.

Register today! https://us02web.zoom.us/webinar/register/WN_QnXo3K8xSbWWL9ehI0vEiA

Join us for the next webinar in our virtual education series - Histio Patient Needs: A Focus on the Eyes and Vision - February 23 @ 4pm EST.

Co-hosted with our friends at the Erdheim-Chester Disease Global Alliance, this webinar will address the most common concerns about eye care and vision associated with a histiocytic disorder and/or the effects of treatment.

Register today! https://us02web.zoom.us/webinar/register/WN_QnXo3K8xSbWWL9ehI0vEiA