Rare Disease Advocacy

NORD (National Organization for Rare Disorders)

NORD (National Organization for Rare Disorders) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 260 patient organization members,  is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

https://rarediseases.org/

GLOBAL GENES

Global Genes®  is one of the leading rare disease patient advocacy organizations in the world. The non-profit organization promotes the needs of the rare disease community under a unifying symbol of hope – the Blue Denim Genes Ribbon®. What began as a grassroots movement in 2009 , with just a few rare disease parent advocates and foundations , has since grown to over 500 global organizations.

https://globalgenes.org/

EURODIS

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of 779 rare disease patient organisations from 69 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

https://www.eurordis.org/

RARE CONNECT

RareConnect is a place where rare disease patients can connect with others globally. RareConnect is a safe environment where privacy is respected and where trusted information is shared via real patient representatives.

https://www.rareconnect.org/en/

RAREDISEASEDAY.ORG

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.

 

https://www.rarediseaseday.org/

RARE VOICES (AUSTRALIA)

Rare Voices Australia, the national alliance of people living with a rare disease, will provide a unified voice to improve the lives of all Australians affected by rare diseases.

https://www.rarevoices.org.au/

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