Consumers and Researchers: Making It Work
Nancye Buelow was diagnosed with Alpha-1 (alpha-1 antitrypsin deficiency) in the spring of 1993 at the age of 40. She is presently the President of the Alpha-1 Association Board of Directors, Secretary of the Genetic Alliance Board of Directors, and an advocate for individuals identified with Alpha-1 and other genetic conditions.
"Most genetic condition communities are made up of two driving forces. One is the research community and the other is the consumer community. Each group is committed to their goals but have very different agendas at times. Advocacy for the two groups can be very different.
In the alpha-1 community we have two organizations that were fashioned to meet the needs of the consumers and the researchers. Both groups were formed by a core group of individuals that were symptomatic with alpha-1. At the start, 10 years ago in 1991, the Alpha-1 Association was formed. The Association sprang from a Midwest support group and grew rapidly into an international advocacy organization that had to meet the needs of many people affected by alpha-1. The Association was doing a good job in meeting most of its mission statement goals, which were education, advocacy and awareness. However, research was not being emphasized. It was impossible to advocate for the needs of the patient community and also address the needs of the research community.
As a result, in 1995, the Alpha One Foundation was formed when a group that was more interested in fostering research splintered from the Association. At first there was little cooperation between the two groups, but the leadership, realizing that they both wanted the same thing, committed themselves to supporting each other in their separate efforts to improve the lives of those affected by alpha-1 antitrypsin deficiency.
The affects of this cooperation have seen enhanced national awareness and an increase in clinical trials and product development by pharmaceutical companies. Advocacy, although a different issue for the Association and the Foundation, has seen the most expansion. This is due to two things. Increased interest due to the human genome sequencing and the cooperation between the two groups has allowed more time for advocacy issues and less devoted to dissention between the two groups. Due to improved communication we no longer duplicate efforts.
Both organizations have working groups that we share. The Foundation created the Medical and Scientific Advisory Committee (MASAC) to advise and steer the alpha-1 research community. The Association has formed the Consumer Issues Advisory Committee (CIAC) to meet the needs of the individuals affected by alpha-1. Although each of these groups is under the umbrella of its parent organization, both organizations have a seat on each others' working groups and contribute ideas and partnership.
Because the different groups were confusing to the press, in 2000 the Alpha-1 Alliance was formed to give the alpha-1 community a common voice when sending out press releases that pertain to both the Association and Foundation.
While the Alpha-1 Alliance gives the appearance of unity, each group is governed by its own board of directors. Possibly in the future a small group from both boards will become the governing body of the Alpha-1Alliance. In the meantime, it is a loosely maintained federation that will come together for the common good and needs of the alpha-1 community for external purposes."
- Barriers to Rare Disease Research
- Benefits of Collaboration with Advocacy Organization Community
- Blood and Tissue Banks
- Educating Membership about Research
- Facilitating Quality Research
- Funding Research by Others
- Getting Needs onto the Research Agenda
- Genetic Privacy
- Orphan Drug Application
- Patient's Bill of Rights
- Promoting Research
- Research Models