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ISMRD Newsletter Archive

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    2024 Newsletters

    2023 Newsletters

    12/28/2023 – End-of-Year Newsletter
    12/22/2023 – Almost there! – Together We Give
    12/15/2023 – More Than Half Way To Our Goal! – Together We Give
    12/08/2023 – Help ISMRD Get to Our Goal! – Together We Give
    12/05/2023 – Opportunity for Alpha-Mannosidosis Families
    12/01/2023 – Together We Give
    11/25/2023 – November Newsletter
    08/31/2023 – Summer 2023 Updates Newsletter
    06/02/2023 – Chiesi Lamzede Webinar for US Alpha-Mannosidosis families
    05/26/2023 – Name Correction – Kathryn Nicholson first person to receive Lamzede in the US
    05/22/2023 – Reminder: NORD: Latino/a/x Rare Community
    04/20/2023 – WANTED: COMMUNICATIONS OFFICER FOR ISMRD
    04/03/2023 – NORD: Latino/a/x Rare Community
    03/16/2023 – President’s Report on WORLDSymposium 2023

    2022 Newsletters

    12/27/2022 – President’s End-of-Year Letter
    12/12/2022 – Rare Disease Academy – Alpha Mannosidosis
    12/08/2022 – CouponBirds Seedling Project
    12/04/2022 – Aiobhe Foundation Donation
    10/28/2022 – Fucosidosis PGT-M Testing
    10/04/2022 – Vale Dr Beck
    09/20/2022 – ISMRD Seeks Treasurer
    09/13/2022 – ISMRD 2021 DONORS
    08/11/2022 – In Memory of Stacy Buchanan
    07/03/2022 – JCR Pharmaceuticals’ Questionnaire
    06/04/2022 – ISMRD Seeks Volunteer Accountant
    04/27/2022 – NORD Webinar – April 28th 2pm ET
    04/10/2022 – ISMRD and Rare Disease Day 2022
    04/04/2022 – Make Your Voice Heard
    02/28/2022 – To our wonderful families on Rare Disease Day 2022
    02/10/2022 – Rare Disease Day Event Hosted by NORD

    2021 Newsletters

    12/19/2021 – The Rare Fair
    12/10/2021 – JCR Pharmaceuticals New Treatment Award
    11/10/2021 – NORD Announces 31 Rare Disease Centers of Excellence
    11/04/2021 – Rare Thinking Conference
    10/13/2021 – Share Your Story
    10/03/2021 – Exciting News for ISMRD
    07/25/2021 – Fucosidosis Families Needed
    07/01/2021 – Seeking new Board members
    06/21/2021 – Jackie’s resignation
    02/22/2021 – Thank you to 2020 donors
    02/04/2021 – Sharing your journey with Alpha-Mannosidosis can advance new treatments

     

    2020 Newsletters

    11/11/2020 – Jenny Noble resigns from ISMRD Board
    11/08/2020 – AmazonSmile
    08/18/2020 – Everylife Foundation Scholarships
    07/14/2020 – Everylife Foundation Scholarships
    06/16/2020 – Calling all Rare Artists
    06/11/2020 – AmazonSmile
    06/10/2020 – Trial to establish safety and efficacy of Velmanase alfa for Alpha-Mannosidosis in North America
    05/15/2020 – NORD Premium and Limited Medical Relief Program
    05/12/2020 – Novel coronavirus pandemic survey
    04/15/2020 – NORD Financial Assistance
    03/17/2020 – Rare Disease Day

    2019 Newsletters

    12/30/2019 – Jenny Noble appointed a Member of the New Zealand Order of Merit
    12/23/2019 – Seasons Greetings from ISMRD
    12/05/2019 – Christmas Fundraiser
    12/01/2019 – Photo Competition
    11/13/2019 – New ISMRD Board Members
    10/31/2019 – Intellectual Functioning in Alpha-Mannosidosis
    10/20/2019 – Mucolipidosis Research Network
    09/11/2019 – Atlanta Angel
    08/29/2019 – ISMRD Conference Playback
    07/07/2019 – ISMRD’s Got Talent
    06/03/2019 – ISMRD congratulates Dr Emil Kakkis
    05/27/2019 – ISMRD Conference – Last Chance for Early Bird discount!
    05/20/2019 – ISMRD Conference July 2019, Family Scholarships.
    05/15/2019 – ISMRD Conference, Early Bird registration closing soon
    04/28/2019 – ISMRD Conference, Atlanta Georgia USA, 25-27 July 2019
    04/05/2019 – Family Conference Fundraiser
    04/02/2019 – ISMRD Conference, Atlanta Georgia USA, 25-27 July 2019
    04/02/2019 – ISMRD Conference, Atlanta Georgia USA, 25-27 July 2019
    03/15/2019 – ISMRD Conference, Atlanta Georgia USA, 25-27 July 2019
    03/04/2019 – Connecticut Rare Disease Family Camp Summer 2019
    03/04/2019 – Connecticut Rare Disease Family Camp Summer 2019
    02/26/2019 – ISMRD Research Fundraisers Update
    02/04/2019 – ISMRD Newsletter February 2019

    2018 Newsletters

    12/19/2018 – Merry Christmas
    12/09/2018 – ISMRD’s Mucolipidosis Research Initiative
    11/18/2018 – EURORDIS Photo Competition
    11/13/2018 – ISMRD’s Mucolipidosis Research Initiative
    10/16/2018 – 2nd Asia Pacific Lysosomal Conference, New Zealand Feb 2019
    09/20/2018 – NICE and Velmanase Alfa
    08/13/2018 – Help us find good doctors for our children
    07/04/2018 – Doctor Database
    06/26/2018 – We have chosen hotel for the ISMRD July 2019 Atlanta Conference
    05/25/2018 – Jenny Noble’s contribution to Lysosomal Diseases
    05/18/2018 – In Memory of Andrea Gates
    05/02/2018 – On the Day of Diagnosis, the Grieving Begins
    04/16/2018 – Andrea Gates
    04/11/2018 – ISMRD Family Survey Results
    03/27/2018 – ISMRD Research Update
    02/26/2018 – ERT for Alpha Mannosidosis
    02/21/2018 – Rare Disease Day 2018
    02/14/2018 – ERT for Alpha Mannosidosis

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    2017 Newsletters

    December 2017 (View and download 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 (View and download 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

     

    2016 Newsletters

    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.

    2015 Newsletters

    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.

    May 2015 (PDF)
    I    n 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.

    2014 Newsletters

    December 2014 (View and download 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 (View and download 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 (View and download 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 (View and download 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.

    2013 Newsletters

    October 2013 (View and download PDF)

    July 2013 (View and download PDF)
    In this issue: International Rare Disease Day events, World Developments – Emil Kakkis works to lure big market drugs toward rare diseases

    2012 Newsletters

    November 2012 (PDF)
    In this issue: 2012 International Scientific/Family conference, Pernille Rolls story, Ivan the Great, Galactosialidosis, Life with a disabilty Chase community Grant

    2011 Newsletters

    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.

    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

    March 2011 (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.

     

    2010 Newsletters

    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

    2009 Newsletters

    September 2009 (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

    2006 Newsletters

    Summer/Winter 2006 (PDF)
    In this issue: Hue-Man Project funded by European Union; Natural History collection for ML to begin.

    2005 Newsletters

    December 2005 (PDF)
    In this issue: Crossing Oceans for a Cure Family Workshop and Walk-Run Fundraiser in Michigan.

    2004 Newsletters

    Summer 2004 (PDF)
    In this issue: 1st International Conference on Glycoprotein & Related Storage Diseases.