Support the PURA Syndrome Foundation on World Rare Disease Day

Join the PURA Syndrome Foundation in celebrating World Rare Disease Day on February 28th, 2022! 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 2021. A few of the ways we have been fulfilling our mission include:

• Hosting a 2021 Virtual Conference which included a variety of educational sessions on everything from genetics, latest research advancements, an introduction to PURA Syndrome, relevant therapies, advocacy, various panel discussions on a range of topics, caregiver health, and more. We also hosted a number of social networking opportunities, including our first "regional meet-ups." A designated website was launched for the Conference and you can access all of the educational sessions at www.puraconference.org.
• Extensive progress on the PURA Syndrome Registry by creating a user guide to assist in completing the Registry, launching to a small pilot group, and the full launch of the Registry was just announced to families and caregivers in January of 2022. The Foundation also funded a Nurse Research Assistant to assist with administration of the Registry.
• Funding a Biobank Fellow to assist with the establishment of a formal Biobank at Helmholtz Zentrum Munchen.
• 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 28th, 2022!

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

Donations can also be accepted by:

Venmo: (@PURA-Syndrome)

PayPal: PURA Syndrome

Damon Fisher - Treasurer

Memo: Rare Disease Day