Accessibility and Disability Services is showing its stripes in raising awareness for Rare Disease Day on the rare leap day, February 29.
What is Rare Disease Day?
Rare Disease Day is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse– but united in purpose.
Rare Disease Day is observed every year on 28 February (or 29 in leap years)—the rarest day of the year.
Though Rare Disease Day is patient-led, everyone, including individuals, families, caregivers, healthcare professionals, researchers, clinicians, policy makers, industry representatives and the general public, can participate in raising awareness and taking action today for this vulnerable population who require immediate and urgent attention.
By Sharing your colors via social media, events, illuminating buildings, monuments and homes, by sharing experiences online and with friends, by calling on policy makers and shining the light on people living with a rare disease, collectively we aim to change and improve lives of the 300 million people worldwide.
Historically, ADS has worked with campus sustainability efforts in recognition in a way that mirrors the United Nations Resolution on Persons Living with a Rare Disease and their Families
The overarching goal of the UN campaign is to recognize that People Living With Rare Disease (PLWRD) are an overlooked population requiring immediate and urgent attention, and global and national policies that address their needs and contribute to achieving the UN 2030 Agenda, the Sustainable Development Goals and their pledge to ‘leave no one behind’.
The 300 million PLWRD around the world and their families face common challenges in all aspects of their daily lives. As a population with increasing vulnerabilities, they are disproportionally affected by stigma, discrimination and social marginalization, within their social environment and in society at large. The paucity of knowledge and expertise on rare diseases and the lack of awareness of the challenges faced by PLWRD mean that they are psychologically, socially, culturally and economically vulnerable.
There are a number of synergies between the rare disease community’s needs and goals, and those of the UN 2030 Agenda and its Sustainable Development Goals , mainly the following ones:
- Challenges affect the whole family and cause overall increased isolation and impoverishment (SDG 1);
- PLWRD lack access to appropriate diagnosis and lifelong care and social support (SDG 3);
- PLWRD face challenges in accessing education at all stages of their life due to inaccessibility of facilities and non-adapted teaching methods (SDG 4);
- Women living with a rare disease face more difficulties in accessing care and, when a member of the family lives with a rare disease, the primary unpaid care role is most often assumed by women (SDG 5);
- PLWRD and their families face challenges in access, retention and return to employment (SDG 8);
- The disproportionate level of vulnerabilities means PLWRD face stigma, discrimination and lack of opportunities for inclusion in society (SDG 10).
At UMBC the Office of Accessibility & Disability Services can be a resource for co-creating a disability-friendly community on campus, including these processes:
A thumbnail of two young zebras peeking above the back of a third zebra, all with different black and white stripe patterns accompanies this post. Credit Hans Veth via unsplash.com