is showing its stripes in raising awareness for Rare Disease Day on the rare leap day, February 29.
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.
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).