Celebrating Rare Disease Day around the world
Teams around the Sobi world are marking Rare Disease Day with special events and activities.
Sobi North America has a full day of activities, featuring addresses by Duane H Barnes, Head of Sobi North America, and Core Best, Senior Director of Sobi North America Study operations, and a conversation with Deanna Fournier, Executive Director of the Histiocytosis Association, as well as Rare Disease Day lunches. Staff will also be joining the NORD Rare Disease Day event.
And to make sure they are all dressed to impress, all North America team members will be getting tie-dye kits for socks (not t-shirts), with the theme of “walk a mile in their socks”.
For Sobi Iberia, Rare Disease Day marks the crescendo of a major campaign focused on “33 proposals to improve the lives of people with rare diseases”.
This major document stems from an initiative that began in 2020, which led to four cycles of seminars with stakeholders including patient organisations, with the focus on individualising patient care. The proposal was presented to Spain’s Royal Court and the Swedish Ambassador to Spain, and then to the Minister of Health and national congress before being launched to the media on Wednesday last week.
Media and social media activities together with the Spanish rare diseases federation and other patient, industry and healthcare bodies are helping spread the message about Rare Disease Day.
Sobi Germany is hosting the Rare Voices Forum for the third time on Rare Disease Day, to create awareness for rare diseases and patients living with one. The main therapeutic areas of the event will focus on familial Mediterranean fever (FMF), immune thrombocytopenia (ITP), paroxysmal nocturnal haemoglobinuria (PNH) and haemophilia. The virtual patient event gathers not only patients, patient representatives and physicians to create a platform for a mutual exchange.
In the first part of the Rare Voices Forum, physicians and patients will jointly give a presentation about medical facts and share insights about living with a rare disease.
Sobi Japan is hosting a presentation event in its office complex to raise awareness among employees working at neighbouring companies. Using signage and posts, the explains what rare and incurable diseases are, and discusses Rare Disease Day.
Sobi is also sponsoring an awareness campaign on rare diseases and specifically paroxysmal nocturnal haemoglobinuria (PNH) through Politico, an online political news service.
Other local Sobi teams are also hosting events and conducting activities including social media campaigns to mark this important day for the rare disease community.
