Accessibility and Disability Services joins the Office of Sustainability in raising awareness for Rare Disease Day on February 28 - especially because students with serious/long-standing health conditions request academic accommodations through Student Disability Services. Similarly, faculty, staff and student employees with rare diseases may seek work-related accommodation through Accessibility & Disability Services. The Office of Sustainability eloquently points out that sustainability, climate, health (which includes mental health) and access to health services are connected on an essential level here:
UMBC's Office of Sustainability invites you to participate in our annual Rare Disease Day Challenge! This Tuesday Feb. 28th, we ask you to share your support, by showing your colors, on social media and using the #UMBCRare. We'll randomly select some lucky folks throughout the day to win some UMBC sustainability swag!
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.
What does this have to do with Sustainability?
The overarching goal of the 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).
Photo of two young zebras peeking above the back of a third zebra, all with different black and white stripe patterns. Credit Hans Veth via unsplash.com