The following events may be of interest to anyone affected by or interested in Glycoprotein Storage Diseases.
Christmas Fundraiser - ISMRD Calendar featuring many of our special children.
If you are interested in selling calendars or would just like to order one or two for yourself, contact Susan at email@example.com
Calendars can be paid for by credit card, via our Paypal account.
We hope that you will embrace this fundraiser and help us raise funds for the following activities.
- $5,000 per year for scholarships to support young investigators to WORLD symposiums to create research interests in our disorders.
- $70,000 for the ISMRD Scientific/Family conference 2015–2016
- $30,000 for the Natural History Study extension over the next five years.
Kelley’s Journey – Facing a Rare Disease with Courage
Denise Crompton is the author of this book. Her daughter Kelley was affected by Mucolipidosis type III. The book is about the family’s journey of living with ML III and how they managed the very complex issues.
You can purchase Kelley’s Journey at Amazon.
Denise has written a sequel to Kelley’s Journey called Diagnosis: Rare Disease which is due out in 2014.
There will also be a revised and expanded version of Kelley’s Journey, including her final years and will be available on-line as an e-book.
International Rare Disease day
February 28, 2013 marks the sixth international Rare Disease Day coordinated by EURORDIS and organized with rare disease national alliances in 25 European countries. On this day hundreds of patient organisations from more than 40 countries worldwide are organizing awareness-raising activities converging around the slogan “Alone we are rare but together we are strong”.
Activities will take place across Europe, all the way to Russia, continuing to China and Japan, in the US and Canada, and as far as Australia and New Zealand!
This is an exciting opportunity for ISMRD to get involved and raise awareness and funds for our very rare diseases. What will you do to raise awareness?