Earlier this year I had the opportunity to attend the Genetic Diseases of Children Conference in New York City sponsored by the New York State Department of Health. What was new and different about this meeting was the mix of people attending: researchers, academics, PATIENT ADVOCATES, government officials, and drug company representatives were all invited [...]
Browsing Posts in Outreach
While attending the APEG (Australian Paediatric Endocrine Group) meeting in Australia, CHI board member, Margaret Maher, learned that some HI patients in Australia were being refused a standard subsidy for diabetics for the purchase of blood sugar level (BSL) testing supplies. On behalf of the denied patients, Margaret entered into discussions with governmental agencies responsible [...]
SAVE THE DATE Congenital Hyperinsulinism Family Conference March 17-18, 2012 Philadelphia, Pennsylvania Congenital Hyperinsulinism International (CHI), in conjunction with the Children’s Hospital of Philadelphia (CHOP), invites you to attend the fourth Congenital Hyperinsulinism Family Conference. Conference attendees will learn about recent advances in the diagnosis and treatment of congenital hyperinsulinism (HI) from experts in the [...]
Last Saturday, June 4, Congenital Hyperinsulinism International (CHI) held a dinner meeting in Boston at the Seaport Hotel bringing together families living with congenital hyperinsulinism (HI), leading world experts in the field of HI and other endocrine fields, and representatives from pharmaceutical and genetic testing companies. The meeting was generously sponsored by Teva Pharmaceuticals and [...]
Please join us for the Congenital Hyperinsulinism International (CHI) Endocrine Society Dinner Meeting on June 4, 2011 from 6:30-9:30 PM at the Seaport Hotel in Boston, Massachusetts. Dinner meeting participants will have an opportunity to speak informally on a range of topics with members of the CHI Scientific Advisory Group comprised of leading world specialists [...]
Have you ever gone to an event where you were so excited about meeting every last person that even waiting on the Ladies Room line was a chance to meet fascinating people? The Genetic Diseases of Children Conference, which is taking place in New York right now, is just such an event. Yesterday, I had [...]
116 people ordered Congenital Hyperinsulinism International T-shirts to wear today, Rare Disease Day, 2011. The fabulous “Be my sugar.” T-shirts, which are available at http://www.cafepress.com/Congenitalhyperins, were sported in many places around world, in English, French, and Spanish, from Australia, to Canada, to the U.S. We are looking forward to hearing all of your stories about [...]
New Jersey Artist, Wendy Letven, has designed a line of t-shirts to help us raise awareness of HI. The shirts are amazing and can be purchased through Cafepress: http://www.cafepress.com/Congenitalhyperins. They are available in various styles and designs, and in sizes ranging from onesies (they are so cute!) to extra, extra large. It is our hope [...]
Rare Disease Day is February 28, 2011. This is our day to grab the spotlight and focus the world’s attention on rare diseases, specifically, our disease: Congenital Hyperinsulinism (HI). We have 45 days to plan our strategy so we can make the most of this day. I had the pleasure of visiting the National Organization [...]
Dear CHI Friends, I am writing to tell you about an excellent opportunity to spread awareness about HI and to share your opinions about the importance of information sharing for taking care of yourself or a child with HI. The attached electronic survey which is being conducted by NORD, the National Organization of Rare Diseases, [...]
