The following events may be of interest to anyone affected by or interested in Glycoprotein Storage Diseases.
International Rare Disease Day 2014
This years theme for Rare Disease Day is Care, with the slogan “Join Together for Better Care”.
Caring for our loved ones comes in many forms. Some patients have access to therapies and some do not. Some patients are independent and others require very complex care. For most children and adults living with a rare disease the primary care is provided by family members and because of the complex care some families are very isolated.
Rare Disease Day 2014 focuses on Care and encourages everyone in the rare disease community to Join together for Better Care.
We encourage all families within the ISMRD network to get involved and help us raise awareness of our very rare diseases. Let’s break the isolation that many of us suffer from and let our communities know about our very special children.
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 firstname.lastname@example.org
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.
The new revised and expanded version of Kelley’s Journey, including her final years and will be available on-line as an e-book on:
- Kindle at Amazon
- Nook through Barnes & Noble
- If you dont have a Kindle or Nook, you can download it from the AuthorHouse site to your computer (requires a download of the free Adobe Reader)