The Hemophilia and Thrombosis Center of Nevada

2020 W. Palomino Lane Suite 110

Las Vegas, Nevada 89106

702-385-2702

since May 5, 2008

Last updated May 5, 2008

webmaster RIS

October Meeting Notes

Minutes forthcoming

The quarterly meeting of the advisory board was held October 15.  If this working meeting is any glimpse of what is to come, this group is destined to improve the awareness and daily lives of those affected with bleeding disorders.  Composed of thirteen diverse individuals, the melding of ideas is exciting and sure to produce great things.

Partnering for the ultimate goal of funding a building for a larger home of the the HTCN is becoming a reality.  While this seems like an extraordinary feat to accomplish, with each meeting, we grow one step closer to this goal.

The Childcare Committee has made much progress.  Several programs with available grant funding have been identified.  In addition, HART has begun paving the way for partnering with several established community organizations to assist with respit care.  Utilizing established programs will allow us to achieve our goals quicker without waiting for grant funding to be realized.

Plans for increasing the awareness of bleeding disorders and the care of children who are affected are under way.  Once day care providers with an interest in providing these services to our population are identified, training can begin.  If we educate child care providers about bleeding disorders, they will be less fearful of caring for our children and this will increase the number of day care organizations that provide safe care for our children.

The Patient Assistance Committee has designed initial guidelines for providing assistance to those in need of financial support after all other avenues have been exhausted.  These guidelines will be further refined before the next meeting when the completed application form will be unveiled so that the program can begin.

The committee members have already begun to arrange for vouchers for medication and durable medical equipment.  This will stream line the process and ensure that funds are applied for those most needed services.  An equipment exchange will round out this program.  This will eliminate the need for costly appliances by allowing sharing by affected persons.

A new concern regarding the availability of life insurance for persons with bleeding disorders will be taken on by this board in the near future.

Lastly, educating the community about bleeding disorders and ultimately involving those in political office is a goal of this determined group.  A new brochure has been designed and will soon be available.  In addition, a template letter has been written identifying the needs of persons with bleeding disorders and the significant out of pocket cost that affects their care.  This letter which we will encourage each individual to send to their local representatives asking for affordable medication and less costly co pays will help to bring the attention of these concerns to our elected officials.  At your next medical appointment, ask for a copy of this letter so that you too may help in this important effort.

Jon HART for the annual tree decoration at Opportunity Village on November 9 as we can use your help.

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Last modified: March 02, 2008