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World Hemophilia Day
April 17, 2020 is the 30th anniversary of World Hemophilia Day! The longevity of this celebration is proof of the dedication and tight-knit nature of our community.
The theme of World Hemophilia Day in 2020 is “Get+involved”. It’s a call to action for everyone to help drive the WFH vision of “Treatment for all” at the community and global level. Whether you are a patient, a family member or caregiver, a corporate partner, a volunteer, or a healthcare provider, we want to encourage you to help increase the awareness of inherited bleeding disorders and the need to make access to adequate care possible everywhere in the world.
The West Virginia Chapter of NHF is excited to announce our 2020 Industry Symposium, where leading drug manufacturers are able to inform you about new products, programs, and answer questions patients, caregivers, and providers may have.
WV NHF is providing industry partners the opportunity to speak directly to patients, caregivers, and providers about their current treatments related to bleeding disorders as well as provide information about new treatments under development, services, and support available to those affected.
Following the conclusion of the event, patients and caregivers will have to opportunity to watch the WVU vs Kansas State Baseball Game. First pitch scheduled for 6PM.
More information about the event will be posted at a later time.
Camp Winica HemoVon
Camp Winaca HemoVon is a 5 day residential camp for children ages 7-17 who have either a bleeding disorder or a childhood cancer diagnosis. Mission: To positively impact and enrich the lives of children diagnosed with cancer or bleeding disorders by offering a camp experience, independent from their family, in a medically safe and educationally supportive environment while promoting personal growth, self worth, self-reliance and creativity through activities and the development of personal relationships that will carry over to their daily lives and throughout their lifetime.
What We Do
We provide a one week residential summer camp program held at Camp Twin Creeks in Marlinton, WV. Camp Twin Creeks provides the camp counseling staff, programming staff and all the activities. WVU Medicine provides all the medical staff and staffs a 24 hour medical infirmary throughout the week of camp. We encourage students from the School of Medicine, Nursing, Exercise Physiology, Pharmacy, Physical Therapy, Psychology or other health care related disciplines to consider volunteering.
All volunteers must complete the Children on Campus training through WVU Human Resources as well as complete a criminal background check and a national sex offenders check.
Volunteer opportunities include: Bus chaperone, medical infirmary under supervision of the Camp Medical Director or other licensed medical staff, camp counselor, photographer.
This camp is setup and operated by WVU Medicine.
Join us at Snowshoe Resort for a weekend filled with fun, education, and bonding between families affected by bleeding disorders.
More information to follow.
National Bleeding Disorders Conference
WV NHF is proud to offer scholarships for families affected by bleeding disorders to attend the National Hemophilia Foundation's Bleeding Disorders Conference. Dates for the event are August 6th to August 8th in Atlanta, Georgia.
More information to follow.
Unite for Bleeding Disorders Walk
Join us for the 2020 West Virginia Unite for Bleeding Disorders Walk.
Spokes Men For Bleeders Ride
We are pleased to announce our 2020 Annual Education Meeting. This year we will be back at Stonewall Resort located in Roanoke, WV.
Presentations on Gene Therapy, mental health, VWD, kids activities, insurance barriers, and more will headline this year's education. Presentations by each HTC, as well as industry partners.
Buffet dinner and breakfast will be served for those attending.
Hotel stay will be available for those that request it ahead of time. Deadline to register for the event is November 1st, 2020.
You may register each individual attending the meeting or register a family and inform number of attendees within the family.
Due to the large number of attendees and budget we can only accommodate one room (4 guests) per affected family, if you have multiple affected family members please contact Fernando for more information and modified accommodations.
Stay tuned for event agenda.