27/02/2023
Cystinosis, osteogenesis imperfecta, retinitis pigmentosa – sound familiar? Maybe not.
February 28 is World . 6000 rare diseases and 300 million people affected worldwide!
This is an important day to raise awareness for rare diseases and improve access to treatments and medical representation for individuals, their families, and their care team.
Today is an opportunity to celebrate the progress that has been made in rare disease research and treatment and to build hope for those affected. World Rare Disease Day is an important reminder that there is still much work to be done to ensure that those with rare diseases have access to the care and support they need.
https://www.rarediseaseday.org/
Raising awareness for patients, families and carers around the world that are affected by rare diseases.