New Publication Highlights the Critical Impact of Advocacy in Telomere Biology Disorders
A new article in Seminars in Hematology, titled “Telomere biology disorders as an example of rare disease advocacy”, highlights how advocacy has helped shape progress in the Telomere Biology Disorder field. The article was co-authored by Team Telomere’s Katie Stevens and Hannah Raj alongside DC Action.
The article describes how advocacy has helped move the TBD field forward in several important ways, including:
- Increasing awareness of when to consider a TBD diagnosis
- Supporting access to appropriate telomere length testing and genetic testing
- Helping develop and share clinical management guidelines
- Building educational resources for patients, families, and clinicians
- Strengthening multidisciplinary care models, including Centers of Excellence
- Supporting programs that connect community and provide support
- Funding and facilitating research, registries, convenings, and collaboration
- Highlighting the need for equity in diagnosis, care, and research participation
One of the article’s central messages is that advocacy is not “extra” or separate from medical and scientific progress. In rare diseases like TBDs, advocacy often provides the structure that makes progress possible. It helps connect people, identify unmet needs, bring specialists together, support research participation, and ensure that patient and family experiences remain central to the work.
For the TBD community, this article is also a reflection of collective effort. Every family story shared, every question raised, every research participation decision, every care experience, and every act of community connection helps shape the future of this field.
As more individuals are diagnosed and new research and therapeutic possibilities emerge, the role of advocacy will remain essential. Team Telomere is committed to continuing this work alongside the community, clinicians, researchers, and partners around the world.