Public Health - Rare Disease Advisory Council
Sponsor: Clarence K. Lam (District 12)Committee: FinanceSubject: Public HealthStatus: Approved by the Governor - Chapter 361 (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 provide recommendations on ways to address the needs of persons with rare diseases in the State; etc.
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Testimony (37)
MGA witness listFAV 19FavorableFWA 2Favorable with amendmentsUNF 15UnfavorableINFO 1Information only
| Position | Witness | Organization | Testimony |
|---|---|---|---|
| FAV | Srebnik, Lauralobbyist | Biotechnology Innovation Organization (BIO) | Written (PDF) |
| FAV | Shillinger, Lauren | Epilepsy Foundation MD Chapter & TSC Alliance MD Chapter | Position only |
| FAV | Peters, Sarahlobbyist | Husch Blackwell Strategies | Position only |
| FAV | Arneson, Emilylobbyist | Kennedy Krieger Institute | Written (PDF) |
| FAV | Morlino, Mary | MarylandRARE | Oral + Written (PDF) |
| FAV | Reed, Annissalobbyist | National Organization for Rare Disorders | Oral |
| FAV | Gill, Lindsaylobbyist | The ALS Association | Written (PDF) |
| FAV | Brannon, Felicia | The Brannon Group | Oral |
| FAV | Wheeden, Kristen | United Porphyrias Association | Oral |
| FAV | Anzelc, Kristin | Individual | Oral + Written (PDF) |
| FAV | Car, Celinda | Individual | Oral |
| FAV | Elliott, Robynlobbyist | Individual | Written (PDF) |
| FAV | Kasemeyer, Pam | Individual | Position only |
| FAV | Lam, Clarence | Individual | Written (PDF) |
| FAV | Payne, Jennifer | Individual | Written (PDF) |
| FAV | Senator Lam, Senator Lamlegislator | Individual | Oral |
| FAV | Senator Lam, Senator Lamlegislator | Individual | Oral |
| FAV | Stone, Jeneva | Individual | Oral + Written (PDF) |
| FAV | Vetter, Drew | Individual | Written (PDF) |
| UNF | Willey, Amy | Individual | Position only |
| 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 | 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 | Pedersen, Stacy | Individual | Position only |
| UNF | Sirkel, Robin | Individual | Position only |
| UNF | West, Derek | Individual | Position only |
| UNF | Williams, Peggy | Individual | Position only |
| UNF | sirkel, jess | Individual | Position only |
| FWA | Peters, Sarahlobbyist | Husch Blackwell Strategies | Written (PDF) |
| FWA | Blitzer, Miriam | Individual | Written (PDF) |
| INFO | (MD), State of Maryland | Individual | Written (PDF) |
Organizations on record
Husch Blackwell StrategiesFAV 1FWA 1
IndividualUNF 1
MarylandRAREFAV 1
The ALS AssociationFAV 1
The Brannon GroupFAV 1
Registered lobbyists who testified
FAVSrebnik, LauraBiotechnology Innovation Organization (BIO)Registered for: Biotechnology Innovation Organization; BioMarin Pharmaceutical Inc.
FAVPeters, SarahHusch Blackwell StrategiesRegistered for: Action Now Initiative, LLC; Alibaba; Ameresco; American Diabetes Association; Apartment & Office Building Association; Barwood Taxi Service…
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…