HIFA welcomes Stichting Rare Care World as a new supporting organisation!

16 January, 2020

Dear HIFA colleagues,

On behalf of the HIFA Steering Group, I am delighted to welcome Stichting Rare Care World as a new HIFA Supporting Organisation!


'Rare is common: more than 7000 rare diseases affect around 400 million people worldwide (source: WHO). Sadly, for many of those affected receiving the right treatment at the right time is often not a matter of course. Most of the rare diseases are genetic and present in childhood. 30 % of the children born with a rare condition do not reach the age of 5 years. Delays in diagnosis are often caused by a lack of awareness... At RareCare we aim to be an open information resource for individuals with a rare disease, their families and their care providers.' https://rarecare.world/

There are now *401* Supporting Organisations worldwide committed to the HIFA vision: a world where every person and every health worker has access to the healthcare information they need to protect their own health and the health of others. The full list, with their profiles, is available here: http://www.hifa.org/support/supporting-organisations

If YOUR organisation would like to add your voice to support HIFA, please apply here:


Supporting Organisations are under no obligation to provide financial support. Those who do so are prominently recognised on our home page and publications.

Every new HIFA Supporting Organisation moves us closer to our goal: a future where every person has access to the healthcare information they need to protect their own health and the health of others.

Best wishes, Neil

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with more than 19,000 members in 180 countries, interacting on six global forums in four languages. Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil AT hifa.org