2024 Annual Partnership Levels
Spotlighting Telomere Science & Illuminating the Patient Voice
Team Telomere business, corporate, and organization Partners are critical to furthering mission, casting vision, and providing accessible, patient-centric support and resources to our community. Your investment brightens the future of our disease. Your support shines light on essential resources critical to providing access to life-changing treatment and care. Thank you for lighting the way!
Our Value Proposition
When patient families win, we all win. By streamlining processes, making treatment guidelines accessible, guiding research relevancy, and providing emotional and financial support— you are partnering with Team Telomere to help ease the burden of a complicated healthcare system by ensuring no one has to face a Telomere Biology Disorder diagnosis alone. Your dollars make immediate and long-term impacts as we work toward a future that includes a cure.
Year-Round Partnership Highlights
Team Telomere has created these Partner opportunities for companies, organizations, and foundations to leverage your visibility and connect on a deeper level with patient families, clinicians, and the rare-disease community. By becoming a Partner, your brand will be presented to our community throughout the year!
2024 Resource Allocation
Your Partnership
- Provides essential funding to ensure organizational growth and stability by accelerating research, providing frontline resources, and cultivating a strong, supportive community for TBD patients, caregivers, researchers, and clinicians worldwide.
- Connects the heart of your brand to the heart of our mission to provide hope and guidance through overwhelming medical circumstances to ensure no one navigates this diagnosis alone.
- Year-round brand exposure and a platform to share your products, services, and publications with our global community.
- Networking with a global community of telomere experts including patient advocates, clinicians, researchers, and treatment providers.
Rare Disease & TBDs By the Numbers
4.8 Years
The average time it takes for rare patients
to receive an accurate diagnosis
8 in 10
Rare Diseases are genetic
Rare Diseases Impact
More people than Cancer and AIDS combined
95%
Of Rare Diseases lack an
FDA approved treatment
80%
Of individuals with Dyskeratosis Congenita develop Bone Marrow Failure by age 30 years
$517,000 in Avoidable Costs
Economic impact of a delayed rare
disease diagnosis per patient
18 Different
Telomere Biology gene variants have been identified and associated with a spectrum of manifestations, from very early childhood to adult-onset illnesses associated with telomeres ranging from significantly less than the 1st percentile to the 10th percentile. 30% of patients still do not have an identified gene
$1 Trillion
Economic impact of rare diseases, with
60% of those costs being shouldered directly
by families and society
