Advocacy Action for MD

News, Advocacy

Three Major Patient Advocacy Groups Focused on CMT Research to Collaborate on FDA “Voice of the Patient Report” and Patient-Focused Meeting

MDA Staff 09/10/201809/19/2018

In honor of Charcot-Marie-Tooth (CMT) Awareness Month, the Muscular Dystrophy Association joins the Charcot-Marie-Tooth Association (CMTA) and the Hereditary Neuropathy Foundation (HNF) to host an externally led patient-focused drug development (PFDD) meeting for CMT. The PFDD meeting is being held on Friday, Sept. 28 at the College Park Marriott Hotel and Conference Center in Hyattsville, . . .

News, Advocacy

SMA Added to National List of Disorders to Screen for at Birth

Kristin Stephenson 07/05/201807/05/2018

After significant collaborative work among many stakeholders in the spinal muscular atrophy (SMA) community, we are pleased to share that the Secretary of Health and Human Services (HHS), Dr. Alex Azar, has accepted the recommendation to add SMA to the Recommended Uniform Screening Panel (RUSP) for newborns. This is a landmark decision for the SMA . . .

Advocacy

Recommendation for SMA to be added to RUSP is announced

Kristin Stephenson 02/08/201802/08/2018

Today, the Advisory Committee on Heritable Disorders in Newborns and Children voted to recommend to the Secretary of Health and Human Services that spinal muscular atrophy (SMA) be added to the Recommended Uniform Screening Panel (RUSP), the national list that guides states on which diseases should be tested for at birth. Newborn screening is essential . . .

Advocacy

MDA Files Comment as US Senate Considers Graham-Cassidy Health Care Reform Bill

Kristin Stephenson 09/25/201709/25/2017

Today the US Senate is holding a hearing on the newest health care reform bill under consideration. MDA has filed the following comment with the Committee in advance of the hearing to urge Congress to avoid rushing through the legislative process and to commit to a bipartisan approach to health care reform.

Advocacy

US Congress moves forward to boost NIH funding

Kristin Stephenson 09/15/201709/15/2017

The Senate Appropriations Committee included in its spending bill a $2 billion increase for NIH.

News, Advocacy

Expanding the ABLE Act

Kristin Stephenson 08/28/2017

August is ABLE to Save month, and in celebration MDA would like to highlight the achievements of the Achieving a Better Life Experience (ABLE) Act and ways to continue its success.

Advocacy

Join Us for an Accessible Air Travel Webinar with Southwest and Alaska Airlines

Kristin Stephenson 08/04/201708/04/2017

Join MDA and representatives from Southwest and Alaska Airlines on Thursday, Aug. 10 at 3 p.m. EDT for an informative conversation about accessible air travel. This webinar is a continuation of MDA’s collaborative accessible air travel efforts as we team up with representatives from the airline industry to discuss traveling with a disability and as we explore ways to help eliminate barriers to access.

Advocacy

Support Increased Federal Funding for NBS Programs

Kristin Stephenson 08/02/2017

With a robust therapy development pipeline and more potential treatments moving forward, MDA believes it is critical that the national programs that support newborn screening efforts in every state have the necessary funding to help ensure all babies have access to life-changing and life-saving therapies.

Advocacy

Senate’s “Skinny Repeal” Bill Will Have a Huge and Harmful Impact on Health Care Coverage, Say 12 Patient and Provider Organizations

MDA Admin 07/27/201707/27/2017

Twelve non-partisan patient and provider groups representing millions of Americans issued the following statement today on the “skinny repeal” legislation the Senate will consider this week.

Advocacy

Health Care Reform Must Be a Bipartisan Effort

Kristin Stephenson 07/19/2017

Health Care Reform Must Be a Bipartisan Effort, MDA and 14 other nonpartisan groups warn

First Previous...456 7...Next Last

Category: Advocacy

Three Major Patient Advocacy Groups Focused on CMT Research to Collaborate on FDA “Voice of the Patient Report” and Patient-Focused Meeting

SMA Added to National List of Disorders to Screen for at Birth

Recommendation for SMA to be added to RUSP is announced

MDA Files Comment as US Senate Considers Graham-Cassidy Health Care Reform Bill

US Congress moves forward to boost NIH funding

Expanding the ABLE Act

Join Us for an Accessible Air Travel Webinar with Southwest and Alaska Airlines

Support Increased Federal Funding for NBS Programs

Senate’s “Skinny Repeal” Bill Will Have a Huge and Harmful Impact on Health Care Coverage, Say 12 Patient and Provider Organizations

Health Care Reform Must Be a Bipartisan Effort

Connect with MDA

About MDA

Ways to Help

MDA Tools

Connect with MDA