Being diagnosed with a rare disease can be stressful, daunting and confusing. Where do you start to begin not only to understand this disease, but how to take care of yourself. No doubt there are so many questions swirling in your head - and you just don't know where to start. So many Acromegalics find that they have maybe become reclusive or depressed, which makes it even harder to ask for help,or reach out for support. 

Because of this, the Acromegaly Community is finding ways to help our newly diagnosed #AcroFamily. The toolkit continues to grow each day, but below you can find some downloadable files that could help with questions for your medical team, a packing list for your hotel stay, etc. We hope you find this helpful! If you find that you still have questions, or that you have suggestions for things to include in our Patient Toolkit,  please contact us at This email address is being protected from spambots. You need JavaScript enabled to view it.

• Questions for your Medical Team 
  Print out a list of medical questions to ask your Medical Team.

• Hospital (Hotel Acro) Packing ListHotel Packing List
  Not sure what to pack when you go to the hospital for your transphenoidal surgery? Print this list to help you pack.
  
  
• Medical Notebook
  Build this binder to help you keep track of your medications, contact information, updates etc. 

Medications used to treat Acromegaly can be very costly, thus unaffordable for so many patients. Both Laneotride and Octreotide can cost $5,000 per shot, without health insurance. With health insurance, the cost comes down to around $3,000 per shot. To help with these exorbitant costs, the pharmaceutical companies offer patient assitance. Please click on the links below to learn more and apply for assistance.

Patients and Health Care Providers can also call IPSEN CARES® at (866) 435-5677

Learn more about this program

Support for patients includes:

• Help you understand your insurance coverage and financial responsibilities through the insurance verification process
• Help you identify/determine pharmacies covered by your plan Provide insurance and Medicare education
• Provide information about financial assistance that may be available
• Patient Support Counselors who are able to provide information in over 160 languages
• One single point of contact to help guide you through getting access to the medicine prescribed by your doctor

To learn more, call 1-800-282-7630.

Do you think that your employer is discriminating against you? There are laws in place for people suffering from medical discrimination.

If you live in the United States and are struggling to handle your medical struggles and your employment circumstances, you have options.

• Pain is a negative sensation caused by noxious stimuli that is registered by the brain which was relayed from receptors externally or internally from the body.
• Pain is tolerated differently by every person, but it’s method of travel is consistent for every person.
• The painful stimulus disturbs the nerve endings sending the pain signal to an afferent nerve. The afferent nerve relays the signal to spinal cord which in turn, sends the message to the brain.
• The painful stimulus disturbs the nerve endings sending the pain signal to an afferent nerve. The afferent nerve relays the signal to spinal cord which in turn, sends the message to the brain.

Pituitary World News Technology Corner

• A Look at Telehealth
• Gene Therapy: some answers
• Patient Story: An amazing diagnosis story

Additional Good Reads: 

• Far Reaching Effects of Pituitary Disorders
• Automatic Detection of Acromegaly From Facial Photographs Using Machine Learning Methods 
• Researchers Find Slightly Elevated Cancer Incidence in Patients with Acromegaly
• Chiasma Completes Enrollment of MPOWERED(TM) Phase 3 Clinical Trial of Octreotide Capsules in Patients with Acromegaly
• Meet the 2018 Laureates: Shlomo Melmed, MD
• Similar A1c Effect for Intermittent vs Continually Restricted Diets
• Differential Diagnoses Should Be Considered in Patients with Features of Acromegaly without Excess GH Secretion
• The Patient Had Pain When He Walked, but There Was a More Telling Change
• Serum IGF-1 in treated acromegaly - how normal is "normal"?
• Acromegaly Complications
• Acromegaly: Know the Symptoms, Advocate for Necessary Screening
• Acromegaly Overview
• Early Manifestations, Sex Differences May Aid in Acromegaly Diagnosis
• From pituitary adenoma to pituitary neuroendocrine tumor (PitNET): an International Pituitary Pathology Club proposal