Embracing Rare Disease Day 2024: Let's Share Our Colours!

This Rare Disease Day, the focus is on emphasizing the importance of equitable access to diagnosis, treatment, care, and social opportunities for the 300 million individuals worldwide living with rare diseases.  The key message for 2024 is simple but powerful: SHARE YOUR COLOURS!

The Rare 2030 survey captured insights from 3,998 patients, carers, and advocates in Europe, and underscores the pressing need for an updated policy framework.

Insights from Rare 2030 Survey:

Top three priorities for individuals with rare diseases:

Treatment: Therapeutic research remains their primary focus for the next decade, with accessing treatments and therapies identified as the key factor to enhance their care.

Care Coordination: Advocating for improved coordination, respondents emphasize the importance of collaborative planning with one doctor, one person, or one expert center to streamline their health and social care. Care coordination is a top priority for both individuals and their carers.

Access to Healthcare Specialists: The clinical experience, including coordination between healthcare professionals and access to specialists, is highly valued. Additionally, social recognition of the disease and its psychological impact are crucial, particularly for individuals with very rare diseases. Improved social recognition holds special significance in this group.

Hope and Aspirations for the Future

Early Screening:  An overwhelming 95% of participants emphasize the importance of early screening, especially at birth.

Advanced Therapies: Hope for advanced therapies, such as gene therapy, shines bright among respondents.

Quality of Life: While 79% of respondents may not expect a cure within the next 10 years, there is a collective hope for an improved quality of life through integrated health and social care.

The Call for Collaborative Research

Patient Engagement: An impressive 94% express a willingness to actively participate in research projects.

Research Focus: A clear call for research that benefits every rare disease, with a focus on diseases lacking treatments, knowledge, high costs, or low prevalence.

A Holistic Approach for Transformation

While current policies play crucial roles, a holistic, integrated approach is indispensable. Bridging research, medical and social care, and leveraging technological opportunities are keys to transformative impact.

Together, let's paint a world where rare diseases are met with understanding, support, and solutions. Share your colours and join the movement for a brighter future!

To read more: https://lnkd.in/ds5Bk5YJ

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