Objective:
Nonprofit organizations that provide educational programs and financial assistance to the bleeding disorders community often face barriers to sustaining and/or expanding their efforts. To help address these gaps in community programs and clinical care, the Hemophilia Alliance Foundation (HAF) created an annual grant funding mechanism that provides $8,000-$10,000 per applicant to increase the capacity of patient-focused organizations. The aims of this study are to evaluate longitudinal trends in these grant applications and gain critical insight into the perceived needs and interests of the patient communities that these organizations serve.
Methods:
HAF grant applications submitted between 2013 and 2020 were retrospectively assessed. The following variables were extracted and harmonized for use in longitudinal analyses: organization type (local chapter/member organization, hemophilia treatment center (HTC), regional core center, or other national organization), application year, geographic location, collaborators, and project descriptions. For collaborative grants, the organizational type was defined as that of the fiscal applicant. Through secondary analysis of project descriptions, indicator variables were created to identify application types (project-based and/or patient assistance-based) and project objectives.
Summary:
A total of 131 organizations submitted 585 grant applications from 46 U.S. states and territories from 2013-20. Among 562 (96%) approved applications, 331 (59%) were from chapter/member organizations, 131 (23%) were from HTCs, 58 (10%) were from regional centers, and 42 (7%) were from national organizations. By application type, 493 (88%) applications allocated funding to projects and 274 (49%) applications allocated funding to patient-assistance programs. The HAF has seen a consistent growth in both the number of applications (59 in 2013; 81 in 2020) and states represented (32 in 2013; 38 in 2020) per year, signaling an identified need for this additional funding source within the community. There has been a positive trend in the number of organizations submitting collaborative applications (17 in 2014; 38 in 2020), many of which have promoted increased visibility of and communication between local chapters and HTCs. In exploratory cross-sectional analyses of 67 chapters/member organizations and HTCs in 2019, 45% of applications allocated funding for hosting local events, 33% for attending national meetings (e.g. the National Hemophilia Foundation’s Bleeding Disorders Conference), 33% for capacity-building (e.g. office equipment, staff training), and 9% for developing new programs.
Conclusions:
This study provides unique insight into the perceived and persistent gaps facing bleeding disorders organizations at the local and national levels that have submitted grant applications to the HAF over an 8-year period. With organizations continuing to demonstrate a need for additional funding for patient-focused projects and assistance programs, further research into the increasing trend toward collaborative grant applications may offer an opportunity for more effective and efficient care in the bleeding disorders community.
Introduction and Objectives:
Von Willebrand disease (VWD) is the most common bleeding disorder, affecting men and women equally. Despite this, awareness surrounding VWD is low. Outreach efforts often only target women, leaving many to assume VWD does not affect men. To begin changing this perception, the National Hemophilia Foundation (NHF) conducted a needs assessment to understand men’s awareness of VWD and experience getting a diagnosis for future programming.
Materials and Methods:
On behalf of NHF, The Harris Poll conducted a nationally representative online survey. From 2015 to 2016 1,002 adult men in the US were interviewed to learn about their health behaviors and awareness of VWD. A second online survey was conducted by NHF targeting men who were diagnosed with VWD to learn about their path to diagnosis and the impact of VWD on their lives. This survey was given to adult men in the US from 2016 to 2017 and 49 responses were included in the analysis.
Results:
The Harris Poll found that only 28% of men say they are aware of VWD and 68% are not sure of the symptoms. Medical providers (69%) are the main sources the men turned to for information about their health, followed by internet sources (40%). The second survey found an average of 8 years from first symptoms to final diagnosis, with almost 60% of respondents diagnosed at 18 years of age and older. When asked what motivated them to seek medical care, 45% cited a significant bleeding incident. Over half reported limitations to work, physical and social activity. Medical providers were one of the most common sources of information and support for men with VWD and the first place men went for information.
Conclusion:
More awareness of VWD is needed and outreach focused online and to medical providers. Diagnosed men need more education and support surrounding their disorder. NHF will continue to pursue outreach efforts and creation of resources for men with VWD.
Objective:
Few online resources are available for teens and young adults living with hemophilia. Frankly.net aspires to serve as a candid, trusted resource on real issues of concern for this age group. Our online forum provides news, tips and information to help young adults with hemophilia live the lives they choose.
Method:
In 2008, an editorial board was established to guide the creation of Frankly.net, an online magazine targeting young men with hemophilia. Board members include experts in the areas of healthcare, social work and advocacy, and two are young men living with hemophilia.
Frankly.net content is controlled exclusively by the editorial board and sponsored by Bayer Healthcare with the goal of casting light on often taboo subjects within the community, such as sexuality, drugs and depression. An editorial calendar is maintained to ensure fresh content is published regularly.
Frankly.net is mobile-optimized and includes rich video content. Users are encouraged to keep up with the latest content by following @FranklyNet on Twitter.
Summary:
Since its inception, the editorial board has guided the creation of more than 80 stories. Articles include topics that resonate with young adults such as travel, entertainment, relationships and sex. Engaging video stories are also available in English and Spanish.
To date, Frankly.net has seen nearly 7,500 visitors from more than 125 countries across the globe, including the US, India, Germany, Canada.
In 2013, Frankly.net underwent a site makeover, re-launching with a new look and feel. Plans to further engage with an international audience are also underway. Korea launched a fully translated site in early 2013 under the guidance of a Korean editorial board. A Latin American version is in development and content from the site has been repurposed and translated in a dozen countries.
Conclusions:
Frankly.net is a unique resource for teenagers and young adults with hemophilia around the world. It continues to push boundaries as a way to help young men navigate the ups and downs of living with hemophilia.
Objective:
Who better to understand and help advocate for the bleeding disorders community than those who live it every day? Step Up Reach Out (SURO) was created to help foster the next generation of leaders in the bleeding disorders community.
Method:
SURO is an international leadership program designed to help build tomorrow's leaders in the bleeding disorders community. The program was created by the University of Texas Health Science Center, Gulf States Hemophilia and Thrombophilia Center (UTHS) in 2007 with support from Bayer HealthCare.
SURO brings together young people (18-24 years old) from around the world for learning, personal growth and collaboration. This one-year program consists of two sessions of leadership training, activities focused on developing communications skills, and individual and group projects. During the time between the two sessions, participants are asked to identify an area in their communities for which they would like to step up and define an action plan, putting into practice the skills they have acquired. They continue to learn from and support one another through the SURO Alumni Network.
Summary:
To date, the SURO program has trained nearly 100 individuals from more than 20 countries, ranging from the US to Mexico, India and beyond. SURO alumni have come out of the program ready to put their action plans to the test, developing programming to support their local community needs.
Conclusions:
SURO helps participants build self-esteem, develop concrete thinking abilities and make decisions that will help make them become leaders in their own right.
