December 2017 (PDF)

    In this issue: In this newsletter you will find the following: President’s Report ,Blessing from the Pope,  Family reports:,        Scientific reports and much more.  Happy Reading.

  • March 2017 (PDF)
    In this issue: In this newsletter you will find the Presidents report, European conference notice, Update on our latest research for Mucolipidosis and much more
  • December 2016 (PDF)
    In this issue: ISMRD announces conference in Europe November 2017.
  • October 2016 (PDF)
    In this issue: In this newsletter is the Presidents commentary, Update on ISMRD’s Mucolipidosis Research, A mouse model for Fucosidosis,Mucolipidosis wristbands, ConnectMPS registry and much more.
  • July 2016 (PDF)
    In this issue: In this newsletter read the Presidents Report, The success of ISMRD’s ML research initiative, Introducing Rhonda Skipper ISMRD’s social media person, Report on the ML Expert meeting in the UK, Metabolic bone study in St Louis and much more
  • April 2016 (PDF)
    In this issue: In this newsletter you will find the following articles.  The Presidents report, New Board member, ISMRD ML Research, Rare Disease day, Research, thank you to donors and much more.
  • December 2015 (PDF)
    In this issue: In this newsletter you will see the Presidents editorial. ISMRD’s research initiative for Mucolipidosis research. ISMRD is looking for someone with Social Media Knowledge, Rare Disease Day. ISMRD’s new facebook pages and much more.
  • September 2015 (PDF)
    In this issue: In this newsletter you will find the editorial from our new President Jackie James, Reports on our very successful conference held in St. Louis, Morgans Wonderland accessible amusement park, Building resilience for Rare Disease Caregivers, new families and donors.
  • Newsletter May 2015 (PDF)
    In this issue: In this newsletter, Early bird registration closes, New board members sought, 11th Annual World Symposium Report, ISMRD fundraisers, International Rare Disease day Virtual Morning Teas, Austrian National Action Plan for Rare Diseases, Australian Rare Disease Summit, Guide for families of people with Special needs,  New Members, Bereavements, Illnesses, and donors.
  • December 2014 (PDF)
    In this issue: In this newsletter: ISMRD Conference fundraiser for families, New Board members sought, Stephen and Lauren tell their story about living with Fucosidosis, International Rare Disease Day, The five most expensive drugs in the world, NIH expands its study for Rare Diseases, Scottish Funding for Rare Disease Drugs, New members, Bereavements, Illness and Donors
  • 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.
  • July 2014 (PDF)
    In this issue: In this newsletter ISMRD announces the 4th International Scientific and Family conference, ML II research grant, Fundraising, Whats happening around the world, Support Resources, New members and donors
  • 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.
  • ISMRD newsletter July 2013.pdf (PDF)
    In this issue: International Rare Disease Day events, World Developments – Emil Kakkis works to lure big market drugs toward rare diseases
  • November_2012_newsletter_final.pdf (PDF)
    In this issue: 2012 International Scientific/Family conference, Pernille Rolls story, Ivan the Great, Galactosialidosis, Life with a disabilty Chase community Grant

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: outgoing and incoming Presidents reports, Conference reminder and draft program, New member to our Penguin family, Life with a disability, Gandhi Foundation grant to greenwood genetic centre, Australian ISMRD family raises awareness for Rare disease day.

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

Newsletter04_vol6no1 (PDF)

In this issue: 1st International Conference on Glycoprotein & Related Storage Diseases.

Newsletter05_vol7no1 (PDF)

In this issue: Crossing Oceans for a Cure Family Workshop and Walk-Run Fundraiser in Michigan.

Newsletter06_vol8no1 (PDF)

In this issue: Hue-Man Project funded by European Union; Natural History collection for ML to begin.

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