General Resources
Patient & Caregiver Help Awareness/Fund Raising Materials Other Histiocytosis Organizations
Patient and Caregiver Help
|
Resource, |
Description |
| List of books that members of the ECD Global Alliance have found helpful. | |
| Description of medical terms that are often used. | |
| List of things ECD patients might want to watch for and discuss with their doctor if they occur. | |
| Helpful ideas that one member of the ECD Global Alliance has implemented with good success. | |
| All sorts of links to resources that might help ECD patients and/or loved ones. Please note, there is a link to a website that can help with no or low cost medicines for those who qualify. | |
| Over view of the different kinds of scans that a doctor might order. | |
| Some therapies that that members have found helpful. Please discuss these with your doctor before trying them yourself. | |
| Helpful hints for those who have trouble swallowing. | |
| Information about how balance works and what goes wrong when it doesn't work. | |
| A short paper that explains some of the disability options and how to get started applying. |
Awareness / Fund Raising Materials
|
Resource |
Description |
| Trifold brochure that provides an overview of ECD. To be printed on the front and back of a single piece of paper | |
| Single page overview of ECD. | |
| Samples of posters that are available for fundraisers and other awareness activities. | |
| Template of business cards that can be printed and provided people who want to donate or remember the ECD Global Alliance website address. | |
| This guide provides step by step instructions to guide someone who have never hosted a fun run before. | |
| Presentations that can be used for talking with groups who want to know more about rare diseases and ECD. |
Other Histiocyctic Organizations
The ECD Global Alliance is the only known organization that supports ECD patients and their families. However, there are other organizations that support histiocytic diseases in general. The majority, if not all, of these organizations focus on Langerhans Cell Histiocytosis (LCH) and are aimed principally at supporting children and their parents. The ECD Global Alliance reaches out to these organizations in hopes that all the histiocytic diseases will some day be a thing of the past.
|
Organization |
Mission |
| The Euro-Histio-Net was formed by several Langerhans Cell Histiocytosis (LCH)-knowledgeable medical experts, patients, and support groups from the European Union (EU), and outside EU. The purpose of this organization is to share and disseminate knowledge and experience. The first objective is to participate in improving care for patients concerned by LCH and other rare diseases belonging to the same ‘family’ of disease. Information is provided in many different languages. | |
| The HistioCure Foundation's mission is to raise funds to support major research programs focused on finding a CURE for histiocytic disorders. It was formed by parents and grandparents of children affected by histiocytic disorders. | |
| The Histiocytosis Association of America (HAA) has a mission to help those dealing with the effects histiocytic disorders by providing a variety of educational programs and emotional support services. The association promotes examination of histiocytic disorders, mainly those affecting children, through scientific and medical research, with the aim of establishing better treatments, a cure, and ultimately, prevention of the diseases. | |
|
Argentina(A.A.H.) |
The Histiocytosis Association in Argentina supports patients and families affected by histiocytosis. |
| The Hystiocytosis Association in Belgium supports patients and families affected by histiocytosis. | |
|
Brazil (Email: roedel@apis.com.br) |
The Brazil Hystiocytosis Organization supports patients and families affected by histiocytosis. |
| The Histiocytosis Association of Canada is an international group of parents, patients, physicians and friends in search of a cure for histiocytosis. | |
| The Histiocytosis Association France aims to help those affected by LCH. It is open to all people with or affected by the disease. | |
| The German Histiocytosis Association provides support to histiocytosis patients and their families. | |
| The purpose of the Artemis Association on HIstiocytosis, Greece is the discovery of pathogennesis disease through scientific conferences. | |
| The Histio Israel is dedicated to helping patients and their families. | |
| Histiocytosis Association of Italian Research exists to support LCH patients and their families and to fund research for LCH. | |
| Histiocytosis Association of Japan supports LCH patients and their families. | |
| Histiocytosis Association of Korea supports LCH patients and their families. | |
| The goal of the Histiocytosis Association of Spain is to promote awareness and encourage research of the disease in all its variants. | |
| The Histiocytosis Associaion Sweden is a parent's association for children with histiocytosis (LCH). | |
| The Histiocytosis Association the Netherlands is a patient organization for Langerhans Cell Histiocytosis and histiocytic related diseases. | |
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The Histiocytosis Research Trust is dedicated to promoting and funding scientific research into uncovering not only the causes of the histiocytosis diseases, Langerhans' Cell Histiocytosis and Haemophagocytic Lymphohistiocytosis , but also ensuring early diagnosis, effective treatment and a cure. |
Last updated: January 30, 2012