Support the PURA Syndrome Foundation on World Rare Disease Day

Join the PURA Syndrome Foundation in celebrating World Rare Disease Day on February 28th, 2021! 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 (https://www.rarediseaseday.org).

The PURA Syndrome Foundation, like many individuals, families, business, and organizations, faced a challenging year in 2020 due to the coronavirus pandemic. Due to the pandemic, research labs were temporarily shut down and some work was slowed. We are a volunteer-led organization, and many of our Board members, like many around the world, were forced to make hard choices and adjustments as they transitioned to working from home and caring for children with PURA Syndrome. Although the early shut down due to Covid-19 prevented us from realizing many of our goals in 2020, we have been amazed at your continued support and are poised to make exciting investments in research and further our mission to serve and educate families in 2021, including:

• The imminent review of several new grants for research and fellowships, two of which will help build the necessary infrastructure to ensure our Global Registry and Biobank are able to run efficiently and effectively for years to come
• Continue to explore options of how we can serve the 350 identified people known to the PURA Syndrome Foundation through regional networks, chapters, and providing resources in numerous languages.
• Hosting the 5th Annual PURA Syndrome Conference with a new virtual format in the summer of 2021. We hope to bring updates from our researchers, speakers on meaningful topics to our families such as therapies, and opportunities for networking and connection among patients, caregivers, clinicians, and researchers.
• Exploring how we can continue to best educate and provide opportunities for meaningful connections between these groups beyond our yearly Conference.

All donations are welcome; however, 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 to ask at least 10 friends and family to donate just $10 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 28th, 2021!

#ShowYourRare #ShowYouCare #AloneWeAreRare #TogetherWeAreStrong #ILoveSomeoneRare #PURAPerfect #ShowYourStripes

Donations can also me mailed to:

PURA Syndrome Foundation,

Attn: Damon Fisher

129 Shelf Rock Road

Driftwood TX 78619 USA