'Raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and carers.'
https://www.rarediseaseday.org/
#RareDiseaseDay
HIFA supports Rare Disease Day
'What are the universal challenges faced by those living with a rare disease?
- The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
- The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
- Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
- Research needs to be international to ensure that experts, researchers and clinicians are connected.'
HIFA stands ready to help raise awareness and address the information and learning needs of people with rare diseases [defined as a disease that affects fewer than 1 in 2,000 people), their families, their health workers, and policymakers. These needs are especially great in relation to rare diseases as compared with more common diseases, resulting in avoidable suffering and death.
Let's build a future where every person has access to reliable healthcare information on rare diseases and is protected from misinformation and stigma - Join HIFA: www.hifa.org
Best wishes, Neil
HIFA profile: Neil Pakenham-Walsh is global coordinator of the HIFA global health movement (Healthcare Information For All - www.hifa.org ), a global community with more than 20,000 members in 180 countries, interacting on six global forums in four languages in collaboration with WHO. HIFA brings stakeholders together to accelerate progress towards universal access to reliable healthcare information.
Twitter: @hifa_org neil AT hifa.org
