Mucolipidosis Research Initiative 2016

                                                     WE MADE IT !!!!!! 

ISMRD intended to raise $100,000 for ML research – we raised $150,000. ISMRD thanks everyone who has been involved in helping to raise this significant amount of funding in particular ISMRD acknowledges its partners.

  • National MPS Society – USA
  • MPS Society – Australia
  • MPS Society – Ireland
  • MPS Society – Spain
  • The Wagner Foundation

We are now accepting letters of intent. Please visit the information page on this.


ISMRD has registered with AmazonSmile, which is a simple and automatic way for you to support ISMRD every time you shop, at no cost to you. When you shop at, you’ll find the exact same low prices, vast selection and convenient shopping experience as, with the added bonus that Amazon will donate a portion of the purchase price to ISMRD.

The International Society for Mannosidosis & Related Diseases, Inc.

International Rare Disease Day 2016

Theme: Patient Voice

Slogan: Join us in making the voice of rare diseases heard.

Next year, 2016, will mark the ninth year that the international rare disease community celebrates Rare Disease Day.

On February 29, 2016, people living with or affected by a rare disease, patient organizations, politicians, caregivers, medical professionals, researchers and industry will come together in solidarity to raise awareness of rare diseases.

The Rare Disease Day 2016 theme ‘Patient Voice’ recognizes the crucial role that patients play in voicing their needs and in instigating change that improves their lives and the lives of their families and carers.

The Rare Disease Day 2016 slogan ‘Join us in making the voice of rare diseases heard’ appeals to a wider audience, those that are not living with or directly affected by a rare disease, to join the rare disease community in making known the impact of rare diseases. People living with a rare disease and their families are often isolated. The wider community can help to bring them out of this isolation.

Our new 2016 Rare Disease Day materials and information can be found here.