Eurordis - Rare Disease Europe

Get involved with EURORDIS activities!

EURORDIS is pleased to launch a new section on eurordis.org dedicated to how you as an individual, patient group or company can get involved with EURORDIS activities. You can:

Take action

• Register to join Rare Barometer Voices – make your voice heard by taking part in surveys on important topics for the rare disease community. Companies can also contribute to the Rare Barometer Programme.
• Patient organisations can learn how to become a member of EURORDIS or Rare Diseases International
• Companies can find out more about joining the EURORDIS Round Table of Companies and becoming a partner of the EURORDIS Awards and Black Pearl Evening.
• From September you can nominate an individual or organisation for a EURORDIS Award or enter the EURORDIS Photo Contest and vote for your favourite photo!
• Get involved in Rare Disease Day. Rare Disease Day 2017 will take place on 28 February. Find out how you or your patient organisation can get involved! Companies can also become a friend of Rare Disease Day.

Connect with others

• Join a RareConnect online patient community or discussion group and discover a safe space in which you can connect with others living with a rare disease.
• Connect with EURORDIS on social media.

Donate or organise a fundraising event

• Donate to support the work of EURORDIS and help improve the lives of people living with a rare disease.
• Hold your own fundraising event to raise awareness of rare diseases:
  • Organise a fundraising event as an individual or with your patient organisation – download the fundraising toolkit.
  • Organise a fundraising event in the workplace – download the specially designed fundraising at work toolkit.
• You can also find out how your fundraising efforts help the rare disease community or see how to pay in the funds you raise.

Get involved with EURORDIS – every effort you make and donation you give to support the rare disease community helps people living with a rare disease!

Eva Bearryman, Junior Communications Manager, EURORDIS