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Rare Disease Day 2021 – 6 continents, 6 portraits, 6 heroes, 6 lives.
www.rarediseaseday.org
28 February 2021 – Rare Disease Day shines a light on the global and diverse community of over 300 million people living with a rare disease and their families.
Rare is many. Rare is strong. Rare is proud.
This redefining of the word Rare, representing over 6000 rare diseases and 6 continents, is highlighted by the individual stories of people living with a rare disease. The video uses the first 6 individual and family stories of Harvey, Syafiq, Angelina, Tristan, Regina and Jon-Kristian who share their experiences, from across the globe, to show that while each rare diseases is rare, as a community we share a lot.
Every year this global, patient-led awareness campaign brings together millions worldwide in solidarity with the 300 million people living with a rare disease worldwide. In 2020, thousands of events took place in over 100 countries, mobilising people living with a rare disease and their families, healthcare professionals, policy and decision makers, and industry and company representatives. We hope that this will grow even more in 2021!
This video is translated in over 30 languages and disseminated globally by the over 62 National Alliance patient organisation partners of Rare Disease Day.
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#RareDiseaseDay is organised by EURORDIS-Rare Diseases Europe and 62 National alliances of patient organisations for rare diseases.
EURORDIS sends a special thank you to all of our rare disease heroes and their families for their participation in the campaign:
– Angelina, Australia, living with an X-linked intellectual disability, microcephaly with pontine and cerebellar hypoplasia (MICPCH)
– Regina, Brazil, is in remission from Leiomyosarcoma
– Zixuan, China, living with Mucopolysaccharidosis type 1 (MPS1)
– Shambhavi, India, living with Alagille syndrome
– Reza, Iran, living with Cystinosis
– Nancy (mother) and Harvey, Kenya, living with Spinal muscular atrophy type 1 (SMA)
– Syafiq, Malaysia, living with Hypohidrotic ectodermal dysplasia (HED)
– Nitzia, Mexico, living with Turner’s disease
– Jan Helge (father) and Jon-Kristian, Norway, living with Osteogenesis imperfecta (OI)
– Tristan, USA, living with Sickle cell anemia
EURORDIS also thanks the following National alliance patient organisations:
China Alliance for Rare Diseases (CHARD)
Federación Mexicana de Enfermedades Raras (FEMEXER)
Instituto Vidas Raras
Malaysian Rare Disorders Society
National Organization for Rare Disorders (NORD)
Norwegian Federation of Organisations of Disabled People (FFO)
Organisation for Rare Diseases India (ORDI)
Rare Disease Foundation of Iran (RADOIR)
Rare Disorders Kenya (RDK)
Rare Voices Australia