100 countdown to Rare Disease Day 2015! Post your event on the Rare Disease Day website today!

People raising and joining hands

Website now open for Rare Disease Day 2015 – Post your event online

The website for Rare Disease Day 2015 is officially open for business! With 100 days to go, now is the time to start planning and communicating your Rare Disease Day event in order to build momentum and attract participation! To get the ball rolling, EURORDIS has already added details for its annual Policy Event in Brussels.

Patients and organisations are encouraged to post information on their Rare Disease Day 2015 activities or to find events to join by visiting the website to see what has been posted where they live. To learn more about how to post your event, join our informational webinar being held on 27 November 2014 at 14:00 (Central European Time).

Rare Disease Day has become an international phenomenon, and patients and patient organisations have been largely responsible for this incredible success. Last year, events were held in over 80 countries and regions, in hundreds of cities around the world, giving participants the opportunity to build awareness for their own disease at the local level. 28 February 2015 marks the eighth Rare Disease Day and you are strongly encouraged to get involved and contribute to the growing global awareness for rare diseases and the common challenges patients and families encounter.

Living with a Rare Disease: Day by day, hand in hand

The theme and slogan for Rare Disease Day 2015 are Living with a Rare Disease: Day-by-day, hand-in-hand. Paying tribute to the patients, families and caregivers who are impacted by rare diseases, the slogan Day-by-day, hand-in-hand evokes the ongoing solidarity between families, patient organisations, and all of society, to find common solutions, advocating for treatments, care, resources and services in solidarity with all stakeholders - caregivers, healthcare professionals, specialised social services, researchers, pharmaceutical companies, policy makers, and regulatory bodies.

Created and coordinated by EURORDIS and organised with rare disease National Alliances around the world, the Rare Disease Day campaign raises awareness amongst the general public, policy makers, public authorities, industry representatives, researchers, and health professionals.

Many ways to join in Rare Disease Day

There are even more ways to participate in Rare Disease Day 2015:

Raise and Join Hands Whether you are with your family at home, 10 people in an office, 100 people at a conference or 1000 people at a public gathering - raise and join hands to show your solidarity with rare disease patients around the world and upload your photo on the Rare Disease Day website. This can be done before the Day or as part of the activities you have already planned on the Day.

Tell your story - Participants in Rare Disease Day from around the world are invited to share their personal stories about living with a rare disease. Send us your story, video or photo.

Organisations and private companies can show their commitment to improving the lives of people living with a rare disease and Become a Friend of Rare Disease Day

 

The Rare Disease Day website contains lots of useful information, including information on the 2015 Theme and Slogan, an InfoPack that offers tips and suggestions on how to get involved, and freely available communications tools you can add to your own website or social media, such as the Rare Disease Day logo and video!

Furthermore, Sean Hepburn Ferrer, son of the late beloved actress Audrey Hepburn who died of a rare cancer, has graciously accepted to be Rare Disease Day Ambassador once again. Mr. Hepburn Ferrer has also created a moving video that can be downloaded and embedded in your social media or organisation website.

Visit the Rare Disease Day 2015 website … and get ready for the special version for tablets and smartphones that will be available in coming weeks.

This Rare Disease Day, let's all get involved for people Living with a rare disease.

Day-by-day, hand-in-hand we are making a difference!

 


Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 17/11/2014
Page last updated: 20/11/2014
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases