Clinical Care Meeting

We are pleased to announce that the 2nd Annual Clinical Care Meeting will be held on Thursday, June 27th, 2019 from 8 am to 6 pm in Anaheim, CA at Disneyland's Grand Californian Hotel & Spa. 

Register for the 2019 Clinical Care Meeting 

Our meeting goals:

  1. Provide an opportunity for SMA health care providers across disciplines to share knowledge
  2. Facilitate collaborative discussions between health care providers to achieve improved care for SMA
  3. Foster clinical care research collaboration across care centers
  4. Promote interactions between new clinicians and leaders in clinical care
  5. Build the SMA clinical care community
  6. Promote conversations between families and patients living with SMA, clinicians, researchers and industry partners

Target Audience:

Health Care Providers who diagnose and care for people affected by Spinal Muscular Atrophy, including physicians, nurse practitioners, physician assistants and nurses, pediatric and adult specialists including neurologists, pulmonologists, rehabilitation medicine, orthopedic surgery, palliative care, physical and occupational therapists, speech and language pathologists, nutritionists, social workers, respiratory therapists and trainees in the above disciplines.

Please note we are not able to offer CME/CE this year.

Full Agenda Here 

Topic Areas:

Innovations in Clinical Care

In the current climate of rapidly changing health care reimbursement and increasingly limited resources, how are you delivering care better, more creatively, or more efficiently? How have you adapted care to address patient needs in ways that are not widely known or used or are revitalized? What lessons have you learned?

Impact of New Therapies on Clinical Care

The approval of the first treatment for SMA in December 2016, and the phase 3 clinical trials for other therapies have significantly changed the disease course of SMA. How has SMA care changed? What new strategies are you employing? What new new outcome measures have you identified?

SMA Newborn Screening

Newborn screening for SMA was approved by the RUSP Committee in July 2018 and is being implemented by states throughout the US. What has your team learned about implementing SMA newborn screening?

Data Registries

New treatments for SMA is altering the natural history of SMA. How is data being used to impact clinical care of SMA?

Submit a Presentation Abstract

We invite you to present your ideas at this meeting and encourage you to submit a Presentation Abstract (currently closed). Presentations will be selected for podium or poster presentation. If your submission is selected, your registration, hotel and travel for the conference will be supported by Cure SMA.

Apply for an Award to attend the Clinical Care Meeting

Cure SMA offers a limited number of awards to help offset the costs for students, trainees, residents, fellows, and non-physician healthcare providers who wish to attend the Clinical Care Meeting and who do not plan to submit a presentation abstract. To be considered for an award, please complete the following application (currently closed). Thank you for your interest in the Clinical Care Meeting. For more information please contact

Submit an Award Program Application 

If you have any questions, please contact the Cure SMA Clinical Care Program Manager, Abigail Paras, at

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