OUR MISSION is to provide an emotional and communal support network for people touched by Acromegaly. We offer a central location for medical information on issues including: surgery, medication, radiation, and post diagnosis support. Most importantly, we work to provide a network of emotional support for our Acromegaly patients, their friends and their family.
Congress is in the process of considering the Build Back Better Act. Unfortunately, the House Ways and Means Committee's portion of this legislation would change the Orphan Drug Tax Credit (ODTC) in ways that would likely reduce the ability of more rare disease patients to have access to an FDA approved drug for their specific condition. NORD is deeply concerned about these possible changes and we need your help!
The ODTC is crucial to the rare disease community because it helps incentivize drug manufacturers to seek FDA approval for orphan indications by allowing them to claim a 25% tax credit for qualified clinical testing expenses for each rare indication. The Ways and Means Committee's portion of the Build Back Better Act would only allow drug manufacturers to claim this tax credit for a drug's first orphan drug indication, and not any subsequent rare indications. Given that 90% of rare diseases lack an FDA approved treatment, NORD fears the changes to the ODTC being considered could have a devastating impact on the millions of rare disease patients who continue to hope for a safe and effective therapeutic option to treat their specific condition.
Please ask your members of Congress to maintain this critical incentive as it is currently in law and ensure more rare disease patients can one day can have access to an FDA approved drug.
Together we are strong,
The NORD Policy Team
The Rare Action Network® is powered by NORD, the leading non-profit organization serving the rare disease community through programs of advocacy, education, research and patient services.
NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment and cure of rare disorders through programs of education, advocacy, research, and patient services. www.rarediseases.org
We know how difficult it is to find a doctor to "listen" and take your issues seriously. It's difficult to find doctors familiar with Acromegaly, the signs, the systems, the associated issues.
Since 2009, the Acromegaly Community has been compiling a list of trusted Endocrinologists, Neurosurgeons, Neurologists, Psychiatrists, Otolarynogologists, Pain Specialists, Family Practitioners, etc. from all around the world for you and your family to reach out. Locate your area and click on the dots to see our recommendations.
Acromegalics and their family are meeting around the world to find support, educate themselves and their loved ones, and become part of our special #acrofamily. No matter how small or large, these events touch our lives and help us accept each other, without judgments or prejudices.
Please check back for upcoming events.
CME Event / Live Pituitary Surgery Broadcast
Saturday, November 6, 2021
8 a.m. to 3 p.m.
It's never too early to start planning to attend the next International Acromegly Community Conference!
Our conference focuses on patient education, building community relationships, getting medical questions and concerns addressed, and building a loving and safe support network! You will walk away knowing you are not alone and that your #acrofamily has your back!
Details and dates are to come, but we know we'll be meeting again in May 2022!