- Created: Wednesday, 22 February 2017 16:31
The Plasma Protein Therapeutics Association (PPTA) is proud to support Rare Disease Day, an annual international event that seeks to raise awareness about rare diseases and the patients and families that are affected by a rare disease.
Each year, the last day in February brings together patient organizations, rare disease patients and families, politicians, and medical and industry professionals from across the world for one grand event: Rare Disease Day. Originally launched in Europe by EURORDIS and its Council of National Alliances in 2008, Rare Disease Day has grown into a global experience with more than 80 countries participating in events.
With 39 National Alliances and Partners, Rare Diseases Day seeks to raise awareness primarily among the general public but also among policymakers, industry representatives, and health professionals about rare diseases and the patients and families that are affected by a rare disease. In the U.S., a disease is considered rare if it affects less than 200,000 people. In Europe, a rare disease is defined as affecting one in 2,000 people. Both organizations estimate that there are as many as 6,000-8,000 rare diseases, with about 80 percent being genetic, chronic, and often life-threatening. Those that are plasma protein disorders include bleeding disorders such as hemophilia, primary immunodeficiencies, which can cause infections and cancer, alpha-1 antitrypsin deficiency, which often leads to lung and liver damage, and other rare diseases for which plasma protein therapies are the only available treatments.
The theme of this year’s Rare Disease Day is “Research” and the 2017 Rare Disease Day slogan is “With research, possibilities are limitless.” This year’s theme highlights the significant impact patients have on driving research, which provides a better understanding for diseases, leading to better treatment options for patients. From advocating for research to participating in clinical trials, patients’ direct involvement in research has helped lead to more personalized care.
The unique nature of rare diseases, including those treated with plasma protein therapies, requires constant vigilance to promote awareness and patient access to safe and effective therapies. Due to the extreme diversity of rare diseases, it is imperative that research is shared internationally allowing medical advancements to be shared across borders. In both Europe and the U.S., PPTA administers standards and certification programs and is engaged in a broad range of regulatory issues, working to advocate and protect patient access to these therapies. PPTA and its member companies continuously work with regulatory agencies, local and national authorities, and health care experts worldwide to ensure patients are benefiting from the latest research and receiving the best care possible.
Want to get involved in Rare Disease Day 2017? There are SEVEN Ways to participate:
- Become a Friend!
Are you part of an organization that has in interest in rare diseases? Become a friend of Rare Disease Day to show your support and to join our 2017 campaign!
- Post your event!
If you are an individual or patient organisation, please register your event by submitting the event form.
- Raise and Join Hands!
Raise and Join your Hands to show your solidarity with rare disease patients around the world!
- Tell your Story!
Tell your rare disease story by uploading a photo and/or video to our website.
- Download our Communication Materials!
Download the Rare Disease Day logo, Information Pack, and other communication materials!
- Join us on our Social Media!
Facebook, Twitter, YouTube, Flickr… Participate in the Rare Disease Day campaign via Social Media!
- Organize an Awareness-Raising Activity
Public marches, informative lectures, meeting with local and national authorities… Since Rare Disease Day started in 2008 thousands of varied and exciting events have been organised to raise awareness for Rare Diseases.
For more information on Rare Diseases Day 2017: www.rarediseaseday.org