Register For Our New Webinar: Transition of Care, Planning for Care for Children with a Rare Disease

November 12, 2016

November 22, 2016 at 10:00am PST

As caregivers age, preparing for your loved one’s future can be daunting. It may be difficult for both you and the loved one in your care as you both transition into new roles and new chapters in your life. How do you plan for care for your adult child living with a rare disease–both physically and financially. This webinar will discuss topics such as housing, financial planning, social support, and emotional obstacles to help you manage these life changes.

If you are unable to attend the live webinar, still register so you can receive a link to the recorded content.

Don’t forget, to access this webinar use the password: “Rare” with a capital “R”


Maya Doyle, LCSW, Children’s Hospital at Montefiore

Maya is Social work clinician and educator with two decades of experience as a social worker in pediatric medical settings. I am an assistant professor in the Department of Social Work at Quinnipiac University, teaching advanced practice and child & family policy. I believe in providing a family-centered continuum of care throughout the experience of chronic and life-threatening illness, and I seek to support the resilience, self-efficacy, and creativity of young people with chronic illness, and their families. Coordination of kidney camp at Frost Valley has been a highlight of my career – an amazing mainstream experience for children with chronic illness.


Chrsity Greeley, Executive Director and Vice President of Research, Cystinosis Research Network

Christy Greeley graduated from the University of Michigan with a Bachelor of Science in Psychology and a Master of Public Health in Public Health Policy and Administration.  She has worked in both laboratory and clinical research at the University of Michigan Medical Center in the departments of Rheumatology, Pathology, and Psychiatry.  She also worked for 9 years in the pharmaceutical industry at Parke-Davis Pharmaceutical Research as a Clinical Research Associate and Clinical Scientist, managing clinical trials for a variety of central nervous system drugs.  She most recently did consulting work for a rare disease pharmaceutical company as a Medical Science Liaison. Christy currently serves as Executive Director and Vice President of Research for the Cystinosis Research Network.  She has previously held the position of President of CRN.

She and her husband Dave live in Chicago, Illinois, have been married for 25 years and have two children, Alex, age 20, and Jack, age 16 with cystinosis.


image1Christian Jacobs, Patient Advocate

Christian is from Ohio where he is currently in college studying Nursing. He is also an outspoken patient advocate for those with Homologous Familial Hypercholesterolemia (HoFH), a rare form of high cholesterol. He is an honorary board member of The FH Foundation and very involved with raising awareness for those with rarer diseases.





Danny_LevineDaniel Levine, Founder & Principal, Levine Media Group

Daniel Levine is an award-winning business journalist who has reported on the life sciences, economic development, and business policy issues throughout his 25-year career. Since 2011, he has served as the lead editor and writer of Burrill Media’s acclaimed annual book on the biotech industry and hosts The Burrill Report’s weekly podcast. His work has appeared in The New York Times, The Industry Standard,, and other national publications.


This webinar is proudly sponsored by

ultragenyxPH-CMYK (1)


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