WINTER 2018 Save The Date Volunteer Event 2019 HNC Annual Meeting in January 12 Charlotte Morrisville, NC March 2, 2019 “Hearts for Hemophilia” Charlotte, NC Casino Night January 26 Hemophilia of North Carolina (HNC) will host Durham, NC its 46th Annual Meeting on March 2, 2019, in Charlotte. The Annual Meeting is HNC’s largest Factor 7 Round Table one-day educational event with sessions geared February 2 towards all ages, backgrounds, bleeding disorders, Morrisville, NC and relationships within the community. Attendees Legislative Day will find opportunities to network with fellow February 12 community members, find support, learn, and Raleigh, NC hear from expert speakers about important news HNC members participating in activities at the 2018 and information related to bleeding disorders. Annual Meeting HNC Annual Meeting March 2 While details of the agenda are still being finalized, HNC is excited to welcome Dr. Steven Pipe, MD, Charlotte, NC pediatric hematologist and medical director of the Hemophilia Treatment Center at the University of Coalition for Hemophilia Michigan. He will be speaking on new and emerging therapies in bleeding disorders. B Symposium March 14-17 As in past years, there will be a First-Time Attendees Session just prior to the start of the meeting where Orlando, FL HNC members who have never been to an Annual Meeting can learn about what to Continued page 4 NHF Washington Days March 27-29 HNC Casino Night: Washington, DC HFA Symposium Hit Big in Durham April 4-7 January 26, 2019 San Diego, CA Durham, NC World Hemophilia Day Back in Durham, the 12th Annual “Hearts for April 17 Hemophilia” Casino Night Fundraiser will be held once Charlotte, NC again in the Grand Ballroom at the Durham Convention Family Festival & Walk Center. This elegant evening out makes a wonderful date for Bleeding Disorders Join in the fun at the Annual night, a night out with friends, or thank you to some of April 27 “Hearts for Hemophilia” Casino Night your outstanding employees. Charlotte, NC Each ticket includes dinner, two bar tickets, $10,000 in In this Edition: “fun money” for the casino UPCOMING EVENTS Page 4 gaming tables, a chance at raffle prizes, music, and more! RECENT EVENTS Page 5 Whether you’re there for the SUPLEMENTO DE LA UNIÓN LatINA Page 12 casino games, the live and silent 260 Town Hall Dr., Suite A SOAR SUPPLEMENT Page 14 auctions, or to enjoy the fun Morrisville, NC 27560 atmosphere and great food, it’s (800) 990-5557 OUR YOUNG VOICES Page 16 [email protected] Continued page 4 www.hemophilia-nc.org HNC RESOURCE CENTER Hemophilia of North Carolina is a non-profit organization dedicated to improving the MISSION quality of life of persons affected by bleeding disorders through advocacy, education, STATEMENT promotion of research, and delivery of supportive programs and services. Contact Numbers Hemophilia Treatment Centers Resource Information East Carolina University National Hemophilia Foundation Hemophilia of North Carolina www.hemophilia.org Brody School of Medicine (800) 990-5557 600 Moye Boulevard Hemophilia Foundation of America (919) 319-0014 Pediatric Hematology/Oncology www.hemophiliafed.org (919) 319-0016 (fax) MA Suite 333 American Society of Pediatric Greenville, NC 27834 Hematology/Oncology National Hemophilia Foundation Phone: (252) 744-4676 847-275-4716 (800) 42-HANDI www.aspho.org www.hemophilia.org Hemophilia Treatment Center of Centers for Disease Control & Prevention Levine Cancer Center and 1-800-311-3435 Hemophilia Federation of America Levine Children’s Hospital www.cdc.gov 1021 Morehead Medical Drive, Suite 5300 (800) 230-9797 Coalition for Hemophilia B www.hemophiliafed.org Charlotte, NC 28204 1-212-520-8272 Phone: (980) 442-4363 www.coalitionforhemophiliab.org Community Health Charities of NC ClinicalTrials.gov (919) 554-3272 (Collect) St. Jude Affiliate Clinic at Novant Health A registry of federally and privately supported Hemby Children’s Hospital www.healthcharities.org clinical trials conducted and service of the US Hematology & Oncology Clinic National Institutes of Health. It gives you 301 Hawthorne Lane, Suite 100 information about a trial’s purpose, who may participate, locations, and phone numbers for Charlotte , NC 28204 more details. This information should be used in Phone: (704) 384-1900 conjunction with advice from health professionals. UNC Treatment Center About This Publication Committee of Ten Thousand (COTT) 1-800-488-2688 UNC Hemophilia and Thrombosis Center www.cott1.org THE CONCENTRATE is the official 170 Manning Drive newsletter for Hemophilia of North 3rd Floor Physicians Office Building Inalex Communications Carolina. It is produced quarterly 201-493-1399 Campus Box 7016 www.inalex.com and distributed free of charge to Chapel Hill, NC 27599-7016 requesting members of the bleeding Phone: (919) 966-4736 LA Kelley Communications disorder community. 1-978-352-7657 www.kelleycom.com Wake Forest University An electronic version may be found on School of Medicine Patient Notification System the HNC website. If you would prefer not The Bowman Gray Campus The Patient Notification System is a free, confidential, 24 hour communication system to receive a mailed copy of our newsletter, Department of Pediatrics providing information on plasma-derived and please contact the HNC office. Medical Center Boulevard recombinant analog therapy withdrawals and recalls. Winston-Salem, NC 27157-1081 1-888-UPDATE-U www.patientnotificationsystem.org We maintain a membership mailing list. Phone: (336) 716-4324 However, we never release any personal Patient Services Incorporated (PSI) information without your permission. Additional Medical Resources Assists persons with chronic medical illnesses in accessing health insurance and pharmacy Duke University Medical Center co-payment assistance. Hemophilia of North Carolina does not Hemostasis and Thrombosis Center 1-800-366-7741 endorse any specific products or services DUMC Box 3422 www.uneedpsi.org and always recommends that you consult Durham, NC 27710 World Federation of Hemophilia your physician or local treatment center Phone: (919) 684-5350 1-800-520-6154 before pursuing any course of treatment. htc.medicine.duke.edu www.wfh.org VISION Hemophilia of North Carolina’s vision is for all persons affected by bleeding disorders STATEMENT to achieve their full potential without barriers or limitations. Hemophilia of North Carolina is a chapter of the National Hemophilia Foundation, a member organization of the Hemophilia Federation of America, a member agency of Community Health Charities, a member of the NC Center for Nonprofits. 2 HEMOPHILIA OF NORTH CAROLINA 260 Town Hall Dr., Suite A, Morrisville, NC 27560 • (800) 990-5557 • [email protected] • www.hemophilia-nc.org HNC NEWS & INFORMATION FROM HNC’S BOARD OF DIRECTORS Calling for Nominations to the 2019-2020 Board of Directors Hemophilia of North Carolina (HNC) is looking forward to HNC seeks support from individuals who represent the diverse welcoming new board members in 2019. The Board of Directors demographics of our community including individuals with the has been working hard for all of our members and we want following experience or talents: your help in finding new people to be elected to the Board of • Fundraising/ Networking Directors. Board positions will be elected by the membership at • Accounting/Finance the Annual Meeting March 2, 2019. Changes have been made to • Public Relations/ Communications how nominations will be handled (see article below), so names of • Law candidates for nomination are requested to be submitted no later • Medical than January 16, 2019. • Computer/software/web design • Event Planning Board positions are open to both HNC members and qualified • Human Resources (HR) individuals outside our affected community. Suggestions of where to find potential candidates include: professionals in CALL TO ACTION: If you know of anyone that might be a good your local sphere of influence, friends, alumni from local candidate for nomination to our Board of Directors, please email colleges and universities, retired individuals, and NC small [email protected] or contact Charlene Cowell by business owners. phone at (800) 990-5557. FROM HNC’S BOARD OF DIRECTORS HNC Board Adopts Elections Policy: A Notice from HNC’s Board of Directors The Hemophilia of North Carolina (HNC) Board of Directors and staff sufficient time to make preparations necessary to run an has recently taken two important actions that will affect future open and smooth-functioning election. elections of HNC officers and board. These include a new If you would like to submit a candidate for nomination to the elections policy (adopted at the September 22 meeting), and a new board, send his or her name and contact information by email to bylaw (Article VI, Section 5, adopted at the October 9 meeting). [email protected] – or contact the HNC office – Together, these actions are intended to bring HNC’s election by January 16, 2019 (that’s 45 days before the Annual Meeting). process up to widely accepted standards for present-day nonprofit The board’s Governance Committee will then arrange a “getting organizations. It is important for the HNC community to be to know each other” meeting with the candidate. This can be either aware of this as we prepare to elect the 2019-2020 HNC Board of in person or by telephone. It’s important to do this well in advance Directors at our next Annual Meeting on March 2, 2019. of the Annual Meeting date. In special cases the Governance The new policy has two main purposes that go hand in hand. First, Committee can accept late nominations, but not later than five days before the election. it will help us identify potential board members who have both the talents and the time needed to support HNC’s mission. Second, We encourage everyone to review the complete Bylaws of HNC and equally important, it creates a thoughtful process for potential and the full Board Member Nomination Policy on the HNC website candidates to get a realistic understanding of the commitment at www.hemophilia-nc.org/board.