RARE Toolkits

Below is a list of all of our current RARE Toolkits.

ADVOCATING FOR YOUR CHILD WITH A RARE DISEASE AT THEIR SCHOOL
CONTRIBUTORS

Contributors

Content Proudly Provided by:

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The New England Genetics Collaborative is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant no 46UMC24093, New England Genetics Collaborative, total award amount $3,000,000 (100% governmental sources).This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

Special Thanks to Our Contributors:

• Leah Burke, MD, Vermont Regional Genetics Center/University of Vermont
• Christine Brown, National PKU Alliance
• Elisa Calderwood, Parent of a Child with Tuberous Sclerosis Complex
• Donna Cutler-Landsman, M.S., Educational Consultant and Advocate
• Vince Donnelly, Ed.D., Associate Professor of Education, University of New Hampshire
• Ann Donoghue Dillon, M.Ed., OTR/L, Clinical Assistant Professor, Institute on Disability/University of New Hampshire
• Evan Farrar, Crisis Intervention and Family Support Counselor at Prader-Willi Syndrome Association
• Christine Giummo, Genetic Counselor, Vermont Regional Genetics Center/University of Vermont
• Debra Geary Hook, MPH, RDN, Nutrition Consultant to Ultragenyx Pharmaceutical
• Tanya Johnson, Special education teacher, Rare Parent and Advocate
• Monica McClain, PhD; Co-Director, New England Genetics Collaborative
• Vanessa Rashid,  Parent of a Child with Unique Challenges
• Karen Smith, Project Coordinator, New England Genetics Collaborative
• Marla Wessland, Parent of a child with Noonan syndrome and active member of the online Noonan syndrome community at “Noonan Syndrome Family” and “New England (USA) Noonan Syndrome Community” both on Facebook

gg thank you