Welcome to MarylandRARE
Bringing advocacy into action to effect change & improve the quality of life for the Rare Disease Community in Maryland.
Upcoming - Rare Community - Events/ Webinars/Meetings
RDLA (Rare Disease Legislative Advocacy) - Monthly Meetings
Once a month RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participating in the calls does not imply support for any of the policy proposals or legislation that are discussed or promoted at meetings.
- Jan 23rd - Organizational Policy Priorities for the 119th Congress
State Advocacy Day – Richmond, VA
Jan. 28 - 29th, 2025
The Rare Disease Legislative Advocates (RDLA) hosts a State Advocacy Day for residents impacted by rare disease to join together and meet their state legislators, share their stories, and help advance the policy priorities of the rare disease community.
Rare Disease Week
Feb 24- 26, 2025
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.
#RAREDC2025
Rare Disease Legislative Advocates (RDLA)
FDA-NIH - Rare Disease Day - 2025
February 27 - 28, 2024 - NIH Main Campus (Natcher Conference Center)
This year, NCATS and the U.S. Food and Drug Administration (FDA), both agencies within the Department of Health and Human Services, will sponsor a shared Rare Disease Day event as part of this global observance. FDA-NIH Rare Disease Day aims to provide the rare disease community — patients, caregivers, families, patient advocate groups, researchers, clinicians, health care providers, and trainees/students — with information relevant to their lived experiences, including activities by FDA and NIH that promote research and product development for this underserved population.
Rare Community - Grants & Scholarships
#RAREis- 2025
Living with a rare disease means managing unique challenges, including frequent doctor visits, rigorous treatment regimens and hospitalizations, and exposure risks. While quality and duration of life continues to improve thanks to improved diagnosis and treatment approaches, individuals living with rare diseases still face disparities in achieving traditional life milestones. That’s why the EveryLife Foundation for Rare Diseases established the #RAREis Scholarship Fund – to enrich the lives of adults living with rare diseases by providing support for their educational pursuits.
Applications will be open from March 18 through April 28, 2025
Lawrence Madeiros Scholarship Fund
The Lawrence Madeiros Scholarship Fund was formed to provide awareness of chronic disorders to the public and to stimulate, foster, and encourage interest, awareness and activism at the state and national level with reference to the fight against chronic disorders. In furtherance of these purposes, the not for profit will provide scholarships to High School Seniors living with a chronic disorder and continuing their education at a college or university.
2025 Deadline - TBD
MarylandRARe - Action Alerts
Safe Step Act
S 652/HR 2630
Step therapy, or fail first, is a health insurance protocol that requires patients try and fail on one or more medications before approving coverage for the treatment initially selected by the patient and their health care provider. When medically inappropriate, step therapy can delay access to needed care and result in sever
S 652/HR 2630
Step therapy, or fail first, is a health insurance protocol that requires patients try and fail on one or more medications before approving coverage for the treatment initially selected by the patient and their health care provider. When medically inappropriate, step therapy can delay access to needed care and result in severe or irreversible health outcomes.
The Safe Step Act would ensure that employer plans offer an expedient and medically reasonable step therapy exceptions process. This exceptions process would help patients skip medically inappropriate step therapy protocols, and access the right treatment at the right time.
Ear Community Asks Advocates to Urge Their Members to Cosponsor Ally's Act,
H.R. 2439 / S. 1135
Ally's Act would ensure private insurers cover osseointegrated devices (OIDs), including Bone Anchored Hearing Aids and Cochlear Implants, for children and adults from birth to age 64, including services, upgrades, surgery and associated costs that come along with these devices. If Ally's Act becomes law, this bill woul
H.R. 2439 / S. 1135
Ally's Act would ensure private insurers cover osseointegrated devices (OIDs), including Bone Anchored Hearing Aids and Cochlear Implants, for children and adults from birth to age 64, including services, upgrades, surgery and associated costs that come along with these devices. If Ally's Act becomes law, this bill would help hundreds of thousands of children and adults have access to life changing treatment, allowing them to live the lives they dream, participate in the workplace and community and enjoy a high quality of life.
Ally's Act was introduced by Congressman Joe Neguse after receiving a letter from Ally Tumblin (now 13 years old) asking him to help her advocate to hear better. She explained that she has trouble hearing without a specific hearing device called a BAHA (Bone Anchored Hearing Aid) and so do other kids too just like her, but they cannot always get these hearing devices because insurance doesn't always cover them.
EveryLife Foundation asks advocates to ask Members to Sign Letter to FDA in Support of Rare Disease Task Force
During Rare Disease Week, advocates asked their Members of Congress to join the Co-chairs of the Congressional Rare Disease Caucus in a sign-on letter to the FDA requesting the formation of an internal FDA task force to review and inform agency-wide rare disease activities. Please join them by taking action online to encourage your Members of Congress to sign-on to the FDA letter.
PPMD asks Advocates to Contact their Members in Support of BENEFIT Act
S. 526 / H.R 1092
Parent Project Muscular Dystrophy asks advocates to contact their Members of Congress in support of the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act . While much progress has been made in Patient-Focused Drug Development, some significant gaps remain. One such gap is the lack of any req
S. 526 / H.R 1092
Parent Project Muscular Dystrophy asks advocates to contact their Members of Congress in support of the Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act . While much progress has been made in Patient-Focused Drug Development, some significant gaps remain. One such gap is the lack of any requirement in law today that the FDA includes as part of its risk-benefit framework any patient experience or patient-focused drug development (PFDD) data. To address this gap, Senators Wicker and Klobuchar and Representatives Matsui and Wenstrup have introduced the Better Empowerment Now to Enhance Framework and Improve Treatments or the BENEFIT Act (S. 526/H.R.1092). This legislation will amend the Food, Drug and Cosmetic Act (FDCA) to ensure that patient experience, PFDD and related data including information developed by a product sponsor or a third party such as a patient advocacy organization or academic institution be considered as part of the risk-benefit assessment.
News - 2023
Maryland State Report Card
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.
Maryland Governor Signs Legislation to Address Needs of Rare Disease Patients and Families Throughout the State
Public Health - Rare Disease Advisory Council HB0302 (SB0188)
May 3, 2023, Annapolis, MD – Patients and families in Maryland’s rare disease community celebrate the passage of Senate Bill 188 (SB 188)/House Bill 302 (HB 302), which officially establishes a Rare Disease Advisory Council (RDAC) in their state.
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