MARYLAND PASSES LEGISLATION ESTABLISHING A RARE DISEASE ADVISORY COUNCIL
Welcome to MarylandRARE
Bringing advocacy into action to effect change & improve the quality of life for the Rare Disease Community in Maryland.
MarylandRARe - Action Alerts
Safe Step Act
Ear Community Asks Advocates to Urge Their Members to Cosponsor Ally's Act,
Ear Community Asks Advocates to Urge Their Members to Cosponsor Ally's 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,
Ear Community Asks Advocates to Urge Their Members to Cosponsor Ally's Act,
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
EveryLife Foundation asks advocates to ask Members to Sign Letter to FDA in Support of Rare Disease Task Force
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
EveryLife Foundation asks advocates to ask Members to Sign Letter to FDA in Support of Rare Disease Task Force
EveryLife Foundation asks advocates to ask Members to Sign Letter to FDA in Support of Rare Disease Task Force
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 Flash
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.
Support the MD Rare Disease Community Today!
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.
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.
- September 21st
- October 19th
- November 16th
- December 14th
RARE Across America
August 7- 18, 2023 - Maryland
Rare Across America 2023 is the opportunity to meet with your Members of Congress at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story.
Rare Disease Legislative Advocates (RDLA)
RARE Health Equity Forum
September 18-19, 2023 - San Diego
The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways in which we can better serve marginalized populations within the rare disease community. In its third year, the event will be focused on the theme of “Equity In Action”.
Global Genes & RDDC
2023 RARE Patient Advocacy Summit
September 19, 2023 – September 21, 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.
Global Genes
Rare Community - Grants & Scholarships
Rare Giving
The EveryLife Foundation for Rare Diseases believes it is critical for policymakers and regulators to hear directly from rare disease patients and caregivers. That’s why Rare Giving, a program of the Foundation, supports organizations that engage patients, caregivers and others in the community in advocacy and public policy.
- Event Sponsorships
- Tools and Resources Grants
- Travel Reimbursements
Applications Close Oct 27th 2023
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
