MEET US IN ST LOUIS, MISSOURI, USA - JULY 23 - 26TH 2015

Our conference pages for the Glycoproteinoses: Fourth International Conference on Advances in Pathogenesis and Therapy are now available. If you wish to be added to the mailing list for up dates please send us your details. Registrations for accommodation and the conference open January 2015.

Newsletter

ISMRD publishes a electronic newsletter called Pathways that has interesting articles and colorful illustrations about ISMRD’s activities, as well as information about Glycoprotein Storage Diseases.

If you would like to download a copy in Adobe Acobat format, please feel free to sample it right on your home computer.

If you have changed your e-mail address or you would like to be added to the e-mail list please contact us at info@ismrd.org.

Latest newsletter

October 2014 (PDF)

In this issue: In this edition: ISMRD conference and fundraisers,Diagnosis Rare Disease book by Denise Crompton, Artwork and photo competitions, Orphan Drugs: Prevalence and Price.

Older newsletters

  • April 2014 (PDF)
    In this issue: In this edition: International rare disease day, Online forum for Rare Disease Caregivers, Dutch National plan for rare diseases,The FDA and Drug development for the fatally ill, Understanding the role of regulatory affairs in orphan drug availability, conferences, New members donors.
  • October 2013 (PDF)
  • ISMRD newsletter July 2013.pdf (PDF)
  • November_2012_newsletter_final.pdf (PDF)
  • Pathways magazine 2012 (PDF)
    In this issue: Outgoing and Incoming Presidents editorials, Conference draft program, New families, Life with a disability by Sylvia Webb, Gandhi Foundation grants $20,00 to Greenwood Genetic Centre for ML II research, Australian ISMRD family raises awareness for Rare Disease Day, World Report on Disability.
  • ISMRD Newsletter August 2011 (PDF)
    In this issue: From the President's Desk; In Memory of Jenny Smith - Alpha Mannosidosis, 2012 International Scientific/Family conference, ISMRD wins Patient Advocate Leaders Award, Family stories, Positive clinical effects for Phase 2 clinical trial for Alpha-Mannosidosis.
  • Newsletter April 2011 (PDF)
    In this issue: From the President's Desk; Appointments to Professional Advisory Board and Board of Directors; From the Fundraising Team; Announcement of Family meeting and Natural History Study; A Family report from the WORLD symposium; What's in the News; Family stories
  • ISMRD_Newsletter_1_March_2011.pdf (PDF)
    In this issue: From the President's Desk; Appointments to Professional Advisory Board and Board of Directors; From the Fundraising Team; Announcement of Family meeting and Natural History Study; A Family report from the WORLD symposium; What's in the News; Family stories
  • Pathways April 2010 (PDF)
    In this issue: From the President’s Desk; Treasurers report and ISMRD’s projects over the last 12 months; Ethan’s slide, Glide and Ride fundraiser; Dr Sara Cathey and Jenny Noble Interview on Shine TV New Zealand; Global Genes project; NIH Announces New Program to Develop Therapeutics for Rare and Neglected Diseases; Lonnie’s Successful Job
  • PathwaysNewsletterSept09 (PDF)
    In this issue: Message from the President; ISMRD Annual report adopted by Board of Directors for the 2008 year; ISMRD and GGC – A positive partnership for research; An Evening of Penguin Dreams – Charity/Auction/Dinner May 29 2009; NIH Announces New Program to Develop Therapeutics for Rare and Neglected Diseases; A Snapshot of David Mackay; In Memory of Kelly Crompton
  • Newsletter06_vol8no1 (PDF)
    In this issue: Hue-Man Project funded by European Union; Natural History collection for ML to begin.
  • Newsletter05_vol7no1 (PDF)
    In this issue: Crossing Oceans for a Cure Family Workshop and Walk-Run Fundraiser in Michigan.
  • Newsletter04_vol6no1 (PDF)
    In this issue: 1st International Conference on Glycoprotein & Related Storage Diseases.