Rare Disease Day 2018

As we close on a tumultuous year in the U.S., we will be working together with other advocacy organizations to help fight to protect the much needed programs that are under attack that assist patients of all types, especially rare disease patients.

Jerry Williams, Founder and President of MSU, will be attending Rare Disease Week this year in Washington, DC. This is a great opportunity to make our voices heard, as myositis and rare disease patients and as a patient-centered rare disease nonprofit. Will you join us?

You, too, have a voice and if you are able to join us in Washington, DC for Rare Disease Week, that would be a great show of unity to support the important work these advocacy organizations do for us, and an important learning opportunity.

For the fifth year in a row, Myositis Support and Understanding Association, Inc. (MSU) is proud to join NORD as a participant in Rare Disease Day (RDD) 2018, a day to help make the voices of patients with rare diseases heard because we can feel our needs silenced by the rarity of our diseases. MSU works every day to give patients with myositis a voice.

2018 Theme: Research

There is so much to be said in the fight to increase rare disease research that the theme for Rare Disease Day 2018 is research, continuing on from Rare Disease Day 2017!

Rare Disease Day is February 28th, 2018 – See ways to get involved below.

Rare Disease Day Video Chat with Idera

We recently collaborated with Idera Pharmaceuticals to help spread awareness and understanding about their Phase II Pioneer clinical trial for investigational drug IMO-8400 for adult dermatomyositis patients.

As part of the Rare Disease Day 2017 theme of Research, and our collaboration with Idera Pharm, we invited Dr. Joanna Horabin to join us for a video chat session to learn more about the currently recruiting, Pioneer clinical trial for adults with dermatomyositis, IMO-8400. To help others learn more about this amazing trial, we recorded it so you can find more information. This trial is active in 17 U.S. locations and 5 outside of the U.S. Idera has made it very easy to be a part of this trial with benefits rarely seen in clinical trials today.

Rare Disease Week on Capitol Hill 2017: A Recap

Rare Disease Day 2017 was held on February 28th. It is always held the last day of February.

This year (2017), Rosemary McNamara attended Rare Disease Week on Capitol Hill and she took a lot of notes and recently did a video information session with MSU and fellow patients and care partners.

This blog piece serves as an addition to her video to provide you with short pieces of information and links to the sites she mentions during the video.