Advocacy Groups: A Powerful Network of Support
We speak to patients and families every day; brave, strong, resilient individuals who share their histio journey. The families and physicians we connect with are from all around the world – in fact, we have connected with over 119 countries since the Association was founded! Many of those countries now have their own advocacy groups. While histiocytosis is rare – you are most certainly not alone.
Our histio journeys are at times filled with much sadness, frustration, and uncertainty; other times we share joy, a sense of calm, and peace. One thing we all share, however, is hope. Hope is fueled by the progress that we have seen over the years: the development of new treatments, increased knowledge about the genetic mutations that can cause histiocytic disorders, better understanding of the classifications of histiocytosis and the acknowledgement of several forms of histiocytosis as a neoplasm.
All of this brings hope for the present and hope for the future. There is one other thing that brought me a tremendous amount of hope when I started in this role almost three years ago; the amount of passion and support that exists around the world across family groups and the medical community!
I have had the pleasure of meeting many histiocytosis patient advocacy groups and hundreds of physicians both within the United States and countries all around the world. The patient advocacy groups are eager to work together for you, to bring awareness to all corners of the globe and to share resources to ensure that all patients, families, and physicians have access to the latest information.
Over the years, the Association has partnered with these organizations for projects including educational webinars, discussions on patient needs and research at the Histiocyte Society meetings, social media campaigns to raise awareness, and more recently have tried to formalize partnerships to benefit the histio community.
In September, at the upcoming Histiocyte Society Annual Meeting, the advocacy groups will be meeting to brainstorm unmet needs of patients around the world and to prioritize these gaps based on what we can potentially begin to address together. Additionally, we have been collaborating with other organizations such as Pituitary World News to bring more resources and information on related conditions such as Diabetes Insipidus to the histio community.
The Histiocyte Society is another example of an international effort to support patients and families The Histiocyte Society is a professional medical association comprised of more than 200 physicians and scientists from around the world. Members of the organization are the leaders in understanding and treating histiocytic disorders. The Society is committed to advancing knowledge about histiocytic disorders and improving outcomes for patients through the planning, development, sponsorship, and oversight of clinical research. For more than 35 years, the Histiocytosis Association has served as a partner, secretariat, and the primary source of funding for the Histiocyte Society. You can read more about our partnership and the work of the Histiocyte Society, here. Each year, at the Annual Meeting and throughout the year as well, the members of the Histiocyte Society share information, collaborate on research across countries, and do everything possible to get us ever closer to cures.
When I was diagnosed with LCH nearly 30 years ago, I never dreamed that so much support and dedication could exist for a rare disease. Every day I am more convinced that while this is a club we never asked to join, it’s one that we should be proud to be a part of. What an incredible community you all truly are!
Find an advocacy group near you by searching for International Histio Organizations, here. Don’t see a local group listed? Let us know in the comments or email us at email@example.com and we’ll try to help connect you if a group exists.