Public Health - Rare Disease Advisory Council
Sponsor: Emily Shetty (District 18)Committee: Health and Government OperationsSubject: Public HealthStatus: Approved by the Governor - Chapter 360 (as of Nov 9, 2023)
What this bill does
Official synopsis
Establishing the Rare Disease Advisory Council to study and make recommendations on matters relating to individuals with rare diseases in the State; requiring the Council to convene public hearings, make inquiries, and solicit comments from the public on the needs of rare disease patients, caregivers, and health care providers; requiring the Council to report to the Governor and General Assembly by December 1 each year beginning in 2024 and to provide recommendations on ways to address the needs of persons with rare diseases in the State; etc.
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Testimony (38)
MGA witness listFAV 16FavorableFWA 5Favorable with amendmentsUNF 16UnfavorableINFO 1Information only
| Position | Witness | Organization | Testimony |
|---|---|---|---|
| FAV | Srebnik, Lauralobbyist | Biotechnology Innovation Organization (BIO) | Written (PDF) |
| FAV | Kunes, David | Delegate Emily Shetty | Oral + Written (PDF) |
| FAV | Shillinger, Lauren | Epilepsy Foundation MD Chapter & TSC Alliance MD Chapter | Position only |
| FAV | Augustine, Erika | Kennedy Krieger Institute | Oral + Written (PDF) |
| FAV | Reed, Annissalobbyist | National Organization for Rare Disorders | Oral + Written (PDF) |
| FAV | Gill, Lindsaylobbyist | The ALS Association | Written (PDF) |
| FAV | Carr, Celinda | The Coordinating Center | Oral + Written (PDF) |
| FAV | Anzelc, Kristin | Individual | Written (PDF) |
| FAV | Bode, Claire | Individual | Position only |
| FAV | Bode, Claire | Individual | Position only |
| FAV | Delegate Shetty, Delegate Shettylegislator | Individual | Oral |
| FAV | Elliott, Robynlobbyist | Individual | Written (PDF) |
| FAV | Kasemeyer, Pam | Individual | Written (PDF) |
| FAV | Payne, Jennifer | Individual | Written (PDF) |
| FAV | Stone, Jeneva | Individual | Oral + Written (PDF) |
| FAV | Vetter, Drew | Individual | Written (PDF) |
| UNF | Diefenbach, Linda | Individual | Position only |
| UNF | Ditraglia, Frank | Individual | Position only |
| UNF | D’Orazio , Daniela | Individual | Position only |
| UNF | Elbourn, James | Individual | Position only |
| UNF | Elbourn, James | Individual | Position only |
| UNF | Fink, Nelda | Individual | Position only |
| UNF | Katz, Janet | Individual | Position only |
| UNF | Kolakoski, Virginia | Individual | Position only |
| UNF | Lang, Alan | Individual | Position only |
| UNF | Lee, Mickey | Individual | Position only |
| UNF | Meyerovich, Mark | Individual | Position only |
| UNF | Ohmen, Elizabeth | Individual | Position only |
| UNF | Pedersen, Stacy | Individual | Position only |
| UNF | Sirkel, Robin | Individual | Position only |
| UNF | Williams, Peggy | Individual | Position only |
| UNF | brenner, loretta | Individual | Position only |
| FWA | Peters, Sarahlobbyist | Husch Blackwell Strategies | Written (PDF) |
| FWA | Hamosh, Ada | Johns Hopkins University | Written (PDF) |
| FWA | Dols, Sharon | The Arc Maryland | Written (PDF) |
| FWA | Greene, Carol | University of Maryland School of Medicine | Written (PDF) |
| FWA | Blitzer, Miriam | Individual | Written (PDF) |
| INFO | (MD), State of Maryland | Individual | Written (PDF) |
Organizations on record
The ALS AssociationFAV 1
The Arc MarylandFWA 1
Registered lobbyists who testified
FAVSrebnik, LauraBiotechnology Innovation Organization (BIO)Registered for: Biotechnology Innovation Organization; BioMarin Pharmaceutical Inc.
FAVReed, AnnissaNational Organization for Rare DisordersRegistered for: National Organization for Rare Disorders, Inc. (NORD)
FAVElliott, RobynRegistered for: American Association for Marriage and Family Therapists; Amica Center for Immigrant Rights; CareForth; Chase Brexton Health System; Coordinating Center, The; Diabetes Patient Advocacy Coalition…
FWAPeters, SarahHusch Blackwell StrategiesRegistered for: Action Now Initiative, LLC; Alibaba; Ameresco; American Diabetes Association; Apartment & Office Building Association; Barwood Taxi Service…