Saturday 29 February was the thirteenth international Rare Disease Day organised by EURORDIS. This year, the overarching message was powerful: Rare is many, rare is strong and rare is proud!

Rare is many. Rare is over 300 million people around the globe.

Rare is strong. The rare disease community joins together across borders and diseases to raise awareness and advocate for equity.

Rare is proud. Show your support for the rare disease community with pride!

Over 300 million people worldwide are living with a rare disease; however, misdiagnosis can be common, leading to treatment delays. In addition, there are often inequalities and difficulties with access to treatment and care, which can create a heavy social and financial burden for patients with rare diseases. To improve treatment options and access for these patients, there is a need for additional research. A number of initiatives currently support research into rare diseases, including: the European Reference Networks, the International Rare Diseases Research Consortium and the EU Framework Programme for Research and Innovation Horizon 2020.

To raise awareness of rare diseases, events are organised in February each year by patient organisations, healthcare professionals, researchers, policymakers and other members of the rare disease community. This year, nearly 500 events were held in over 100 countries worldwide. In the UK, some of the events included:

• Rare Film Festival.
• Drug Repurposing for Rare Diseases Conference (Findacure).
• Rare Disease Day Westminster Reception.
• Show Your Rare hands-on activities (Great Ormond Street Hospital).
• Genetics Matters: lay lectures and hands-on research tables (Newcastle University).

Over the next decade, the goal of Rare Disease Day is to achieve equitable access to opportunities (including access to health and social care, diagnosis and treatment) for people living with a rare disease by:

1. advocating for the social inclusion of people living with a rare disease
2. including rare diseases in universal health coverage.

To help achieve this aim, why not get involved in Rare Disease Day 2021 by organising a local event. You could:

• hold a meeting, workshop or conference
• organise an art, photography or essay-writing competition
• coordinate a walk or march
• plan a fundraising event
• arrange a face painting event to #ShowYourRare.

Logo source: https://www.rarediseaseday.org/downloads (EURORDIS)

——————————————————–

Summary by Emma Evans PhD, CMPP from Aspire Scientific

——————————————————–

With thanks to our sponsors, Aspire Scientific Ltd and NetworkPharma Ltd