HISTIOCYTOSIS ASSOCIATION INC

Part of the mission of the Histiocytosis Association (the Association) is to identify and address the need of histiocytosis patients and their families. In doing so, the Association engages in a number of efforts to assist the Histio Community in dealing with the unique circumstances of having a rare disease.

Information available regarding histiocytosis, its diagnosis and treatment is very scarce. When individuals contact the Association for the first time, whether it is by phone or through the website, they are provided with an Educational Resource Package that guides them through the stages of getting to know the disorder. The package is customized according to a patient’s specific histiocytic disorder diagnosis to provide the maximum amount of appropriate information available.

Patients with histiocytic disorders and their families often feel very alone and hopeless as they face the devastating effects of histiocytic disorders. The rarity of histiocytic disorders also makes it difficult for patients and families to have the opportunity to meet and share with others who understand what they are going through. To help alleviate the pain of feeling isolated, the Association hosts in-person Patient and Family Educational Meetings throughout the United States and reaches the global community virtually, through live and recorded webinars.

Educational meetings offer the opportunity to learn the latest information about histiocytic disorders through a presentation from experts and to connect with other patients and families in their region. The informal atmosphere invites the sharing of personal experiences and the offering of emotional comfort and moral support. Medical experts in the field of histiocytosis speak at the meetings and share the latest research findings and treatments. A question-answer period follows the presentations and provides patients and families the opportunity to ask whatever questions they have in relation to the disease.

Because histiocytosis is so rare, it is often difficult to impossible to locate others diagnosed with the same disease. One of the only ways to do this is via the Internet. In order to provide a means of linking patients together, the Association created its website back in 1996, making it one of the first nonprofit organizations to host an online center for its community. Activity on the site grew rapidly, especially in the message board area, where patients and families could connect directly with others engaged in the same daily struggles of coping and managing a rare disease. The Association website features extensive educational materials and references, a Physicians Directory searchable by geographic location and specific histiocytic disorder, volunteer opportunities, a Frequently Asked Questions section, and many other powerful resources.

Histiocytic disorders affect less than 200,000 children and adults in the United States each year. As such, histiocytic disorders are not widely known or understood by the general public, or even within the medical community. Patients often find themselves searching for a knowledgeable physician, one that knows more about the disease than they do as a patient. To assist patients and their caregivers in identifying essential resources, the Histiocytosis Association has established a database of physicians with specific experience in the treatment of histiocytic disorders.

The Histio Physician Directory provides patients with the opportunity to locate a physician in their area that has experience treating histiocytic disorders. All physicians included in the Directory have expressly agreed to have their name shared with patients seeking medical attention through the Histiocytosis Association.  Patients and/or their caregivers can search the Directory for knowledgeable doctors within 300 miles of their selected location in the US and worldwide. 

Each year, more than 850 people contact the Histiocytosis Association for the first time; nearly half of those new contacts utilize the service of the Directory.

Each year, dedicated Association volunteers organize special events throughout the United States to raise funds and awareness for histiocytic disorders. By hosting events in their communities, volunteers help educate their friends, family, colleagues and neighbors which makes a huge impact on research, awareness, education, and the fight for better treatments and cure.

Organizing these events not only raises funds to support Association programs, it provides Association members with an incredible feeling of empowerment. Through distributing educational materials and having Association representatives in attendance, these events spread the word about histiocytosis to entire communities while educating the public about the various programs of the Association.

The principal goal of the volunteer program is to recruit, retain and recognize highly valuable volunteers by providing them with meaningful work assignments.   Participating volunteers contribute to the Association’s success by providing the talents and resources that become available through a formalized volunteer program. Association volunteers perform important tasks and receive recognition for their contributions in a variety of forms. The volunteer program benefits the Association’s members by enhancing the its ability to fund scientific research that results in advancements in medical treatment.  In addition, the program enables the Association to offer patients and family members opportunities to become involved in the organization’s work.

A well-structured, high-quality volunteer program can be extremely beneficial to any organization, as volunteers often possess various talents, skills, and abilities that an organization otherwise would not have at its disposal. Although volunteers offer their skills for free, volunteers are not free. It is the philosophy of the Association that volunteer programs thrive when volunteers are provided with clearly stated goals and expectations, properly trained and supported in their work, acknowledged for their contributions, and recognized appropriately. When a volunteer program incorporates these elements, staff and volunteers can then work together effectively to achieve an organization’s mission.

 

It is in the best interest of non-profit, charitable institution, such as the Association, to manage formal volunteer program. The presence of a formalized program demonstrates that an organization understands the importance of, and has proper respect for, a volunteer’s time and efforts. As the Association’s volunteer program operates based upon a clear set of guidelines and expectations, which are communicated to volunteers during their initial interview and orientation. Because volunteers’ roles are well defined before their service to the organization begins, they are assured (I don’t know about this phrase) that their experience of working on behalf of the Association will be as rewarding as possible. For the aforementioned reasons, the Association’s formalized volunteer program was officially launched on April 20, 2009. Since its inception the program t has recruited, and maintained, 36 active volunteers at the time of this writing.

 

As noted above, the histiocytic disorders are rare. As a result, histiocytosis patients - and therefore Association members – are scattered throughout the United States. A smaller number of members live in different countries around the world. Almost all Association volunteers were members of the organization prior to beginning their service; consequently the majority of them are located in different areas across the country, while a few live outside of the United States.

The volunteer program aims to address needs that are identified through feedback from the Association’s members. No one knows what these are better than members themselves.  Therefore, the organization feels that recruiting its members to serve as volunteers is the most productive way to maximize its resources.  Once these needs are recognized, the Association then draws upon its volunteer resources to complement its staff-led efforts in those areas. The organization’s volunteers improve the lives of its members by creating and managing support groups and networks, raising awareness among physicians so that earlier diagnoses can be made, and participating in many other important activities. By operating a formalized volunteer program built upon the central tenets of recruitment, training and retention, and recognition, the Association makes it possible for its volunteers to contribute in vital ways to the health and wellbeing of its members.