RARE DISEASE DAY – 28th February -Raising awareness and generating change for the three hundred million people worldwide living with a rare disease, their families, and corers.
Rare Disease Day is the official international awareness-raising campaign for rare diseases which takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the public and decision-makers about rare diseases and their impact on patients’ lives.
Rare Disease Day was launched by EURORDISRare Diseases Europe and its Council of National Alliances in 2008.
There are over three hundred million people worldwide living with a rare disease. Together across borders, and across the 6000+ rare diseases we work towards more equitable access to diagnosis, treatment, care, and social opportunity.
Their key message for Rare Disease Day 2022 is to SHARE YOUR COLOURS!
Find out lots more on the Rare Disease website.
Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity!
1 in 20 people will live with a rare disease at some point in their life. Read the articles below for strategies that address the needs of those living with rare diseases.
- Improving Care for People Living with SCD: A model protocol with best practices for caring for people living with sickle cell disease (SCD) and a helpful compendium of tools and resources for providers, patients, and caregivers were developed to accompany the 2017-2021 SCDRCTDP Report to Congress. Funding for this report was provided by the Health Resources and Services Administration
- Reducing Missed Clinic Appointments: People with rare diseases, such as sickle cell disease, experience unique challenges, such as maintaining scheduled appointments. Watch a series of helpful webinars about reducing missed appointments. This project was funded through the Patient-Centered Outcomes Research Institute (PCORI).
Content Development for Newborn Screening Clearinghouse: To increase awareness, knowledge, and understanding of newborn screening and genetic conditions, NICHQ partnered with Genetic Alliance to develop, revise and deliver general, state-specific and condition-specific newborn screening websites content.
Improving Care for Children with Special Healthcare Needs: NICHQ is leading a learning and action network (LAN) for seven SNAQ teams to support a high-quality system of care in Florida that serves all children and youth with special healthcare needs, regardless of insurance status and location.
Improving Sickle Cell Disease Care – Hemoglobinopathies Coordinating Center: NICHQ, with partner organization Abt Associates, is supporting a Hemoglobinopathies National Coordinating Center (NCC) to help SCD treatment demonstration program grantees — including community and federally qualified health centres — address structural and systemic barriers in their regions and implement evidence-based SCD care.