Hemophagocytic Lymphohistiocytosis - Histiocytosis Association

Hemophagocytic Lymphohistiocytosis - Histiocytosis Association Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder of the immune system primarily affecting

08/10/2023

Next Wednesday, join us for Peer-to-Peer Support calls, hosted in Spanish. We also have calls scheduled on Tuesdays and Thursdays for patients and caregivers that are hosted in English. For the full schedule of Peer-to-Peer sessions and to register to join, please visit www.histio.org/peer-chats.
Here is a special message from Ana, the host of next Wednesday's group.
"Hola Histioguerreros y familia! Mi nombre es Ana Valdez, soy embajadora de la asociación de histiocitosis en los Estados Unidos, defensora de pacientes, facilitadora de grupos de apoyo, y guerrera de histio. Me diagnosticaron con dos tipos de histiocitosis: histiocitosis de células de Langerhans y Erdheim Chéster. Mis síntomas comenzaron en mi último trimestre de embarazo en el 2017, pero me diagnosticaron formalmente en 2020. Ha sido un viaje largo e incierto, pero mantengo la esperanza. Es mi pasión conectar y apoyar a otros en este camino. Disfruto ayudar y alentar a las personas en todas las áreas y etapas de este viaje de vida. Trabajo con psicólogos y profesionales capacitados para ofrecer herramientas, facilitar grupos, y brindar apoyo emocional a nuestras comunidades. Me siento honrada y emocionada de poder ofrecer nuestros grupos de apoyo en español a nuestra comunidad latina. Espero depositar esperanza y ofrecer un espacio seguro mientras nos sumergimos en temas y conversaciones que pertenecen a nuestro jornada de histiocitosis. Los invito a unirse a nosotros mientras abrazamos la verdad y compartimos nuestra historia. ¡Nos vemos pronto! Ana"

On Tuesday, Michael Jordan M.D. presented a webinar on the genetics of HLH, what we do know, what we don't know about th...
06/15/2023

On Tuesday, Michael Jordan M.D. presented a webinar on the genetics of HLH, what we do know, what we don't know about them, and what we can learn.

The recording of the webinar is now up on YouTube channel and webinars page of our site, complete with a Q&A during the last half an hour.

Click here for the full video: https://youtu.be/3tpuFydd3FY

A huge thank you again to all of the partners for this webinar listed above.

10/20/2022

We will be sharing more about the upcoming conference and answering questions!

We are excited to host a Conference on Histiocytic Disorders on Thursday, November 10th and Friday, November 11th in person in Memphis, Tennessee and online in a virtual capacity. The agenda will include talks that cover all histiocytic disorders, and information on clinical trials, emotional support and well-being, and transitioning from pediatric to adult care.

Register here: http://give.histio.org/site/Calendar?id=100061&view=Detail

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

Mark your calendars for our Camp Out for Histio virtual event! On September 18th we are once again asking the community ...
06/23/2021

Mark your calendars for our Camp Out for Histio virtual event! On September 18th we are once again asking the community in joining us to sleep under the stars and raise money for histiocytic disorders. Be on the lookout for our announcement on how to register!

06/15/2021
Check out our new website and let us know what resources you'd like to see more of as we continue to update it.
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.

Our friends at NORD are hosting a free webinar focused on transitioning from child to adult care for rare disease patien...
04/14/2021

Our friends at NORD are hosting a free webinar focused on transitioning from child to adult care for rare disease patients on April 21 at 2pm ET.

Register at bit.ly/3wcJHEc

New webinar: "Transitioning to Adult Care” on Wednesday, April 21 at 2:00pm ET. Register: bit.ly/3wcJHEc
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As rare disease patients approach adulthood, they face the transition from parent-supervised pediatric care to more independent adult models whereby they take ownership of their care. This change can seem daunting for patients and parents, especially when dealing with rare disorders that involve multiple specialists that may be part of a care team.

Join the National Organization for Rare Disorders, Inc. (NORD) to learn how to plan for this change and to hear from a mother and son, who will share their experiences transitioning from pediatric to adult care as a family living with Congenital Bilateral Perisylvian Syndrome (CBPS).

Join the Histiocytosis Association in our advocacy work!  The Association participates in several Community Congresses t...
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...

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

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Pitman, NJ

Opening Hours

Monday 9am - 5pm
Tuesday 9am - 5pm
Wednesday 9am - 5pm
Thursday 9am - 5pm
Friday 9am - 5pm

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