2023 LEGISLATIVE SESSION January 11 - April 10, 2023
Welcome to MarylandRARE
Bringing advocacy into action to effect change & improve the quality of life for the Rare Disease Community in Maryland.
Maryland RARE Action Alerts
RDAC - Rare Disease Advisory Council
Prior Authorization/Step Therapy - Protect Patients and Physicians
Prior Authorization/Step Therapy - Protect Patients and Physicians
SB0188/HB0302
The Maryland House Health and Government Operations Committee is currently considering House Bill 302, which would create a Rare Disease Advisory Council in Maryland.
Prior Authorization/Step Therapy - Protect Patients and Physicians
Prior Authorization/Step Therapy - Protect Patients and Physicians
Prior Authorization/Step Therapy - Protect Patients and Physicians
SB0515/HB0785 and SB030/HB0305 (2 for 1!)
Prior Authorization and Step Therapy policies (known as utilization review) used by the insurance carriers are increasingly hurting patients and overburdening physician offices.
Genetic Testing Protection Act of 2023
Prior Authorization/Step Therapy - Protect Patients and Physicians
Genetic Testing Protection Act of 2023
SB0212/HB0155
Prohibitions on Disability, Life, and Long-Term Care Insurance and Educational Materials.
News Flash
Maryland State Report Card - 2023
In 2015, NORD launched its State Report Card project with a goal of evaluating how effectively states are serving people with rare diseases.
NORD hopes the State Report Card can serve as a tool for patients, advocates, and policymakers as they strive to advocate for state policies to best serve the needs of the rare disease community.
A Bill for the Establishment of a RDAC - Rare Disease Advisory Council has been introduced in the General Assembly Public Health
Public Health - Rare Disease Advisory Council HB0302 (SB0188)
In the House - Hearing 2/14 at 1:00 p.m.
Establishing the Rare Disease Advisory Council to study and make recommendations on matters relating to individuals with rare diseases in the State;
Support the MD Rare Disease Community Today!
On May 12, 2022, Gov. Larry Hogan signed the much-needed RUSP alignment bills, HB 109 (Shetty) and SB 242 (Hershey), for the state of Maryland.
Championed by EveryLife Foundation, Maryland is now the tenth state to pass such historic legislation. However, it would not have been possible without the support and dedication of our own rare advocates such as Jennifer Payne and Claudia Fennel and others, who provided riveting testimony during the hearings. Thank you everyone for your advocacy and support. To learn about this ground breaking moment, click the following link:
Upcoming - Rare Community - Events/ Webinars/Meetings
RDLA (Rare Disease Legislative Advocacy) - Monthly Meetings
RARE Disease Week on Capitol Hill - 2023
FEBRUARY 28TH – MARCH 2ND, 2023
Now in its 12th year, Rare Disease Week on Capitol Hill empowers and inspires hundreds of advocates each year. The connections you make during the week will impact rare disease patients for generations to come.
RARE Drug Development Symposium 2023: Collaborate: Go Farther, Together
May 1-3, 2023 - Philadelphia, PA
Collaboration is the foundation of success in rare disease research. Knowing who to work with, what strategies to use, and how to prepare for discussions can help you overcome barriers posed by small populations and limited funding.
Living Rare, Living Stronger Patient and Family Forum
May 6, 2023 - Washington, D.C.
Bringing the rare disease community together in our nation’s capital for a day of learning, networking and fun! Join others to learn more about living your best life while navigating your rare disease journey.
2023 RARE Patient Advocacy Summit
September 19, 2023 – September 20, 2023 - San Diego, CA
Each year, Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies at the RARE Patient Advocacy Summit.
Rare Community - Grants & Scholarships
Scholarship for Survivors
PAF - program offering educational scholarships to students who have suffered (or are suffering) from cancer or a chronic illness. For students who have, despite their diagnosis, excelled academically, served the community, and desire to pursue a secondary education.
Academic Year 2023-2024 will open October 14, 2022.
RARE Belonging
Rare Belonging is a unifying marquee for a suite of funding priorities designed to benefit people affected by one of the over 7,000 rare diseases identified on the Genetic Alliance and Global Genes’ RARE list (Rare Disease), including patients, their families, and caregivers. Rare Belonging seeks to help the rare disease community cope with isolation, attain education and job skills support, and help alleviate economic burdens.
Ongoing
