Show your support of PURA syndrome - Visit our Rare Disease Day PURA shop for some PURA Syndrome Foundation merchandise. 

Store collections include:

  • I love someone rare

  • Accessories

  • Stationary

  • Kids & Baby

  • Clothes

  • Drinkwear

  • #PURAperfect

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15% of the proceeds from all sales will be donated to the PURA Syndrome Foundation. Direct donations to the PURA Syndrome Foundation are always welcomed too.

 

PURA Syndrome Foundation registered with Amazon Smile

The PURA Syndrome Foundation is now a registered charity with Amazon Smile.  Tens of millions of products on AmazonSmile are eligible for donations. You will see eligible products marked “Eligible for AmazonSmile donation” on their product detail pages.

Amazon donates 0.5% of the price of your eligible purchases to the PURA Syndrome Foundation when you shop at smile.amazon.com. AmazonSmile is the same Amazon you know with the added benefit of supporting charitable organizations. Only purchases from within the USA are eligible.

Can you hold a fundraising event for the PURA Syndrome Foundation?

We appreciate your assistance in raising funds for our mission to serve, educate and fund research for families coping with the effects of PURA syndrome. There are lots of different ways you can help.

Holding a public event:

  • Concert at a venue

  • Party at a bar or restaurant or event space

  • Tournaments/sports/games nights

Private events held in the home of the fundraiser:

  • Host drinks or a meal in your home

  • Home shopping experience

Online fundraisers:

  • Honour a child’s birthday, your birthday or other special milestone

  • Fundraise for a race/event

Events held by local eateries, retailers or your place of employment:

  • Restaurants

  • Bars and pubs

  • Boutiques and other retailers

  • Your workplace

If you are interested in hosting a fundraiser for the Foundation we can provide assistance with invitations, graphics, ticketing, ideas for auction donations and other resources. Download the PDF above for details. Please contact Amanda Shanks at a.shanks@pura-syndrome.org
Thank you for your help.

The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .