Rare Disease Advisory Council Legislation Re-Introduced

March 4, 2025

New Hope for Michigan’s Rare Disease Community

In recognition of February 28th as “Rare Disease Day”, Rep. Jason Morgan (D-Ann Arbor) reintroduced legislation that would establish a Michigan Rare Disease Advisory Council. In a press release, he articulated the need for a body whose mission would be to help inform, evaluate and advise on policies and issues related to rare disease research, diagnosis, treatment, education, and accessibility to care, and to generally serve as a voice for Michigan’s rare disease community to state government. 


The newly introduced bill is the fifth attempt in Michigan to form an RDAC since 2018. North Carolina was the first to launch such an advisory group in 2015 largely driven by rare disease advocates and families wanting to make a difference. Since then, 29 additional states have created similar councils. 



In October 2024, the State of Michigan’s Department of Health & Human Services implemented a RDAC administratively in advance of anticipated legislative action. The group is in the early stages of defining its mission and workplan, but one goal remains and that is embody the group in statute and ensure a long-term commitment to addressing concerns by Michigan’s rare disease community. The MI RDAC is led by Stephen Rapundalo, CEO of MichBio and Laura Bonnell, President of the Bonnell Foundation

RECENT ARTICLES

April 15, 2025
MichBio seeks a highly motivated individual who can work creatively in a small team environment and assist in data mining, compilation, and research.
April 11, 2025
The Biotechnology Innovation Organization (BIO), of which MichBio is a state affiliate recently released the results of a survey of its members, noting that “U.S. Biotechs Sound the Alarm” on tariff impacts. The findings include: Tariffs on European Union and Canadian imports would increase manufacturing costs for 94% and 82% of biotech firms, respectively. 70% of companies anticipate higher manufacturing costs due to tariffs on China. Tariffs on the European Union would force 50% of biotech firms to identify new research and manufacturing partners. More than 50% of biotech firms predict “increased difficulty” in funding and conducting research if EU tariffs are enacted. 80% of biotech firms would need at least 12 months to find alternative suppliers; 44% would need over two years. The survey noted that sudden tariffs would fundamentally punish American companies, threaten vital research projects and imperil United States leadership in biomedical science. Read BIO’s press release , along with an one-pager summarizing the survey results. 
April 10, 2025
A federal commission, in a new report , is calling for $15 billion in new financing to reinforce the United States’ biotech leadership amid encroaching competition from China. This comes against a backdrop where the Trump Administration has proposed severe cuts to NIH operations and funding. The National Security Commission on Emerging Biotechnology was created by Congress in 2022 to explore how biotechnology advancements could shape the economy and national security. The body quickly focused on China, as that government has gone about gathering Americans’ genetic information and intellectual property in the biotech space and resourcing their cluster’s rapid growth. The report’s 49 recommendations, organized across six strategic pillars, offer a bold and actionable framework to protect U.S. biotech intellectual property and bolster drug development, agriculture, and biological weapons defense: Prioritize biotechnology at the national level Mobilize the private sector to get U.S. products to scale Maximize the benefits of biotechnology for defense Out-innovate our strategic competitors Build the biotechnology workforce of the future Mobilize the collective strengths of our allies and partners The report calls for $1 billion to create an investment fund, more than $6 billion for large-scale research challenges, and a build-up of biomanufacturing sites across the country. Also, it calls for new legislation barring companies that work with U.S. national security agencies or health agencies from using certain Chinese biotech suppliers. The commission doesn’t have the power to authorize any changes but can make recommendations and advise members of Congress. BIO issued a statement in support.