- Founded/Established in and Short synopsis of aims and objectives
The EPDA is the only European Parkinson’s disease umbrella association. Founded in 1992, we represent national Parkinson’s associations in nearly 30 countries across Europe and advocate for the rights and needs of more than 1.2 million people with Parkinson’s and their families. Our vision is to enable all people with Parkinson’s to live a full life while supporting the search for a cure. Our mission is to become the leading voice for Parkinson’s in Europe by providing innovative leadership, information and resources to all Parkinson’s stakeholders.
- (Up to) 2 major achievements/ongoing work
One of the EPDA’s key pillars is to provide cutting-edge information and education to all Parkinson’s stakeholders. Parkinson’s Life (www.parkinsonslife.eu) is an online ‘lifestyle’ magazine that publishes content of the highest quality; it shares personal stories, expert opinions and information about good Parkinson’s practices around the world. About Parkinson’s (epda.eu.com/en/pd-info) is the largest European online Parkinson’s library, including comprehensive, up-to-date information on everything from diagnosis to end of life. Every piece of information has been researched, reviewed and validated by European Parkinson’s experts.
My PD Journey (www.mypdjourney.com), meanwhile, is one of the EPDA’s current and most ambitious initiatives. Its aim is to present policymakers with evaluated solutions (based on our own research) that meet the identified needs of people with Parkinson’s rather than focusing solely on ‘the problems’. My PD Journey brings different stakeholders together to achieve real and sustainable change. The current My PD Journey project is the composite scale, which has been developed by European Parkinson’s specialist neurologists to measure the severity of symptoms of people with Parkinson’s (both motor and non-motor) in a timely way. The scale is quick to use (15 to 20 minutes) and grades the relative importance of particular symptoms, taking into account patient perspectives that are important in the delivery of timely and effective treatment and care.
- Outline of plans for 2017 – focus on major awareness day or activity
Our 2017 plans will mostly focus on our #UniteForParkinsons awareness-raising campaign. This year marks 200 years since Parkinson’s was recognised as a health condition, so World Parkinson’s Day (11 April) provides a perfect opportunity to truly unite the global Parkinson’s community. The EPDA and Parkinson’s UK are urging all Parkinson’s stakeholders around the world to use the dedicated campaign hashtag – #UniteForParkinsons – on 11 April 2017 to raise unprecedented amounts of awareness about the disease. By uniting for Parkinson’s, we can spread the same message on one day all over the world, and going forward we can make World Parkinson’s Day a global platform to encourage a bigger focus on Parkinson’s.
#UniteForParkinsons will primarily be an online social media campaign: everyone can participate by posting support messages on Facebook, Twitter and any other social media platforms on 11 April 2017, using the #UniteForParkinsons hashtag. The EPDA and Parkinson’s UK originally aimed to secure the support and active engagement from organisations and people in 50 countries. However, following initial outreach, we expect many more countries to get involved.
To support the campaign, the EPDA and Parkinson’s’ UK have produced a logo, user guide and website. Please visit www.worldparkinsonsday.com to learn more about the campaign and how to get involved.
- Statement of importance of working with physicians(/EAN) and comment on what a patient organisation – such as the EPDA – can bring to a scientific panel.
Working with medical organisations, physicians and people with Parkinson’s are of equal importance to the EPDA. Good communication between patients and physicians is essential for the holistic management of Parkinson’s. Our validated Parkinson’s information, as well as the data collection projects we have carried out since 1998, provides strong evidence that reinforces the need for better education of patients and healthcare professionals about the complexity of Parkinson’s. Good communication should lead to better compliance and a full life for people with Parkinson’s and their families.
- You can find out more about who we are and who we represent here:
EPDA member organisations: www.epda.eu.com/en/about-the-epda/our-members/
Our strategic goals: http://www.epda.eu.com/en/about-the-epda/our-work/
- Should you wish to know more, please get in touch with:
Parkinson’s Life logos: https://www.dropbox.com/sh/kzk1q2t190bh1in/AACadSmq1u9GMo0rs4xu7fMta?dl=0
#UniteForParkinsons logos: https://www.worldparkinsonsday.com/downloads/
My PD Journey logos: https://www.dropbox.com/sh/2o74u3orwh8ly84/AABNi2Q1xANg7OFeZTO12nCEa?dl=0