Putting a Spotlight on Supporting Rare Disease Patients and Families

2024 Rare Disease Day: Thursday, February 29, 2024
AscellaHealth EU
· 10 min read

Steeped in the key issues associated with rare diseases, including the growing need for research, accelerating pathways to diagnosis and treatment, optimising patient clinical outcomes and ensuring the affordability and accessibility of novel, very expensive treatments, AscellaHealth emphasises the importance of this observation and its alignment with our company’s mission to always lead with a patient-centric approach.

AscellaHealth’s team of professionals with extensive expertise and decades of experience with specialty and rare disease patients is a single-source partner for industry stakeholders to collaborate with and bring forward the pressing needs of about 36 million people in the EU, a further 3.5 million people in the UK and 400+ million worldwide – mostly children -- facing an estimated 7,000 rare diseases.

Rare Disease Day is an ideal time to promote greater awareness of the challenges facing patients: even after an accurate diagnosis, which could take years, treatment is not readily available because only six percent of rare diseases have approved therapies.

To address these issues, AscellaHealth supports manufacturers with end-to-end commercialisation solutions to advance the development of therapies and streamline the complex and lengthy process of bringing these new therapies to market.

Helping with Treatment Costs

Being able to afford treatments, often more expensive than those for common diseases, poses a significant challenge for individuals with rare diseases. At AscellaHealth, we collaborate with pharmaceutical companies and payers to provide innovative financial and technology solutions for high-cost specialty pharmaceuticals and rare disease treatments. This strategic partnership with pharmaceutical manufacturers and payers ensures that patients receive access to critical treatments.

Supporting Pharmaceutical Manufacturers and Payers, Driving Innovation

Bringing new and innovative treatments for rare diseases to market is a challenge for even the most experienced manufacturers of specialty pharmaceuticals. The high cost of research and development coupled with the uncertainties of payer reimbursement for expensive therapies have made the introduction of innovative treatments increasingly complex.

Join with Us!

Rare Disease Day takes place every year on the last day of February, February 28, or February 29 during leap years—the rarest of calendar dates to underscore the nature of these diseases. By focusing public attention on rare diseases as a public health concern, there is a greater likelihood to accelerate the development of potentially lifesaving treatments.

Extending its commitment to the rare disease community, AscellaHealth is doing its part to support the rare diseases community by bringing together broad audiences including patients, patient advocates, caregivers, health care providers, researchers, students, industry representatives, and government staff.

Together, we can change the quality of life for millions of people living with rare diseases.

For further guidance and assistance, contact AscellaHealth.

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