Resources

LOCAL HEMOPHILIA TREATMENT CENTERS

Akron Children’s Hospital Hemostasis and Thrombosis Center
Akron Campus
One Perkins Square
Akron, OH 44308
330.543.8732

Beeghly Campus
6505 Market Street
Boardman, OH 44512330.746.9522

University Hospitals of Cleveland Hemophilia Treatment Center
11100 Euclid Avenue
Cleveland, OH 44106
216.844.3345

Traveling? Click here for the CDC’s listing of all Treatment Centers.

LOCAL CAMPS
Camp Bold Eagle and Eagle Outpost: Holton, Michigan
Camp Hot to Clot: Western Pennsylvania
Flying Horse Farms: Columbus Ohio area

Click below to view a video featuring camper, Caleb R. who talks about what camp means to him.

NATIONAL ORGANIZATIONS

    The National Hemophilia Foundation is dedicated to finding better treatments and cures for bleeding disorders and to preventing the complications of these disorders through education, advocacy and research.

    The Hemophilia Federation of America is a national nonprofit organization that assists and advocates for the bleeding disorders community.  Their vision is that the bleeding disorders community will remove all barriers to both choice of treatment and quality of life.
    Canadian Hemophilia Foundation: Strives to improve the health and quality of life for all people with inherited bleeding disorders and to find a cure.

  • World Federation of Hemophilia: An international not-for-profit organization dedicated to improving the lives of people with hemophilia and related bleeding disorders.
  • Committee of Ten Thousand: A grass-roots, peer led, education, advocacy and support organization for persons with HIV disease.  The majority of their constituency is persons with hemophilia who contracted HIV/AIDS from tainted blood products.
  • Platelet Disorder Support Association: A non-profit corporation founded in August 1998 to provide information, support and encourage research about ITP and other platelet disorders.
  • Center for Disease Control: Their Prevention’s Blood Disorders Division operates with a purpose to reduce the morbidity and mortality from blood disorders through comprehensive public health practice.
  • Glanzmann’s Research Foundation:  Dedicated to finding a cure for Glanzmann’s Thrombasthenia, an inherited bleeding disorder.
  • National Blood Clot Alliance:  A patient-led, voluntary health advocacy organization.  NBCA volunteers include many of the nation’s foremost experts on blood clots and blood clotting disorders.

NATIONAL SERVICES AND RESOURCES

  • Patient Notification System: A free, confidential, 24 hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.
  • Medic Alert Foundation: Founded more than 50 years ago and is the only nonprofit emergency medical information service.
  • LA Kelley Communications (PEN Newsletter): Founded in 1990 with the belief that any individual facing hardship, adversity or challenges-when given the right tools-can overcome, triumph, and even grow stronger in character and confidence.
  • Patient Services, Inc.: A non-profit organization based in Virginia, that has been expanding its effort to help patients with chronic illnesses pay for rising drug costs.
  • FDA’s Blood Products Hotline: Provides information for patients, and supports programs specifically designed to help ensure that patients’ voices are reflected in the regulatory decision making process.
  • American Thrombosis and Hemostasis Network:  The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit organization committed to advancing and improving care for individuals affected by bleeding and thrombotic disorders.

SCHOLARSHIPS

There are a number of educational scholarships available for people with bleeding disorders and their children, parents, partners, spouses and siblings.  HANDI has compiled a list that you can view at the NHF website by clicking here.