Join the PURA Syndrome Foundation in celebrating World Rare Disease Day on February 29th, 2024! Every year, the PURA Syndrome Foundation joins with other rare disease organizations in raising awareness for the more than 300 million individuals diagnosed with a rare disease worldwide. 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. For additional information on the full campaign, you can visit https://www.rarediseaseday.org.
The PURA Syndrome Foundation has had a busy year exploring opportunities to support research and serve and educate families in 2023. A few of the ways we have been fulfilling our mission include:
- Launching our brand new website.
- Hosting our first in-person conference since 2019, which was held in the UK. The conference included a variety of educational sessions on everything from genetics, latest research advancements, self care and more. We also hosted a number of social networking opportunities. All of the educational sessions are available at the Conference website at www.puraconference.org.
- Continuing our registry meet-ups to encourage our community to complete the Global Patient Registry.
- Hosting our World Rare Disease Day Campaign and PURA Syndrome Awareness Campaigns to raise awareness amongst the general public for rare diseases and PURA Syndrome.
- And more!
All donations are welcome! We also ask you to consider creating your own personal fundraising campaign in order to raise awareness for the PURA Syndrome Foundation. We ask you to consider setting a goal of $1000, a goal that can be achieved by identifying at least 10 friends and family willing to donate just $100 to the PURA Syndrome Foundation. Creating your own fundraiser is simple and easy. Find out more and get started now.
We hope you will join us in celebrating and raising awareness for PURA Syndrome on February 29th, 2024!
#ShowYourStripes #ShowYouCare #AloneWeAreRare #TogetherWeAreStrong #ILoveSomeoneRare #PURAPerfect
Donations can also be accepted by:
Venmo: (@PURA-Syndrome)
PayPal: PURA Syndrome
Damon Fisher - Treasurer
Memo: Rare Disease Day