See Advocacy Spotlight Interview /Focus on the Tarlov Cyst Disease Foundation
Tuesday, October 21st, 2014
NORD Rare Diseases Breakthrough Summit Meeting October 21-22, 2014 http://www.raredr.com/articles/Tarlov-Cyst-Disease-Foundation Reta Honey Hiers, RNC President/Executive Director Tarlov Cyst Disease Foundation was in attendance at this important event as a Tarlov cyst patient advocate and as a Poster Presenter. NORD’s Rare Diseases and Orphan Products Breakthrough Summit is the largest and most meaningful multistakeholder event of […]
Read More »FAQs Regarding Medicare and the Affordable Care Act Marketplace
Friday, August 1st, 2014
http://www.cms.gov/Medicare/Eligibility-and-Enrollment/Medicare-and-the-Marketplace/Downloads/Medicare-Marketplace_Master_FAQ_8-1-14.pdf This document is a compilation of the most frequently asked questions (FAQs) regarding the intersection of Medicare and the Marketplace. Unless otherwise noted, these FAQs have been cleared for use in response to public inquiries.
Read More »NORD Press Release
Tuesday, March 18th, 2014
NORD to Host Capitol Hill Briefing on “Rare Diseases in a Changing Healthcare Landscape” The National Organization for Rare Disorders (NORD) will host a Capitol Hill briefing to address topics of particular interest to the rare disease community during this period of significant change in our nation’s healthcare environment. TOPIC: Rare Diseases in a Changing […]
Read More »Rare Disease Awareness Day is February 28,2014
Friday, February 28th, 2014
The Tarlov Cyst Disease Foundation is a Partner with NORD in increasing awareness about Rare Diseases, especially Tarlov/perineural cysts. Please check the NORD(National Organization for Rare Disorders) website http://www.rarediseases.org for information about events and efforts to increase awareness about Rare Diseases.
Read More »NORD Opposes Congressman Camp’s Proposed Repeal of Orphan Drug Tax Credit, Says It Threatens Health of People with Rare Diseases
Thursday, February 27th, 2014
The following statement was issued today by Peter L. Saltonstall, President and CEO, National Organization for Rare Disorders (NORD): Washington, DC, February 27, 2014— A proposal made public by Rep. Dave Camp (R-Michigan) to amend the Internal Revenue Code of 1986 would repeal the Orphan Drug Tax Credit, one of the most successful tax credits […]
Read More »NORD Press Release
Friday, October 11th, 2013
More Than 100 Rare Disease Patient Organizations and Medical Experts Join NORD in Urging Congress to End the Shutdown Delays in Vital Medical Research and Development of Therapies Harm Children and Adults with Rare Diseases, According to National Organization for Rare Disorders Washington, DC, Oct. 11, 2013—–In a strongly worded letter to Congressional leaders, the […]
Read More »October 6-9 2013 – NORD Rare Disease Conference held in Bethesda MD
Friday, September 20th, 2013
Reta Honey Hiers, RNC President/Executive Director of the Tarlov Cyst Disease Foundation attended this important stakeholders meeting/conference to represent the Foundation and the Tarlov cyst patient population and to give them a voice at the conference. Health Insurance Marketplace 10/1/13 start date
Read More »NORD Press Release – 3rd Rare Diseases Conference October 7-9, 2013
Wednesday, September 18th, 2013
Deputy HHS Secretary, Investors and Entrepreneurs to Share Their Vision of Upcoming New Era in Health Care How Will the Affordable Care Act, Globalization and Current Market Trends Affect Development of Therapies for People with Rare Diseases? Washington DC, Sept. 18, 2013—-One of the hottest trends in the pharmaceutical and biotechnology industries in recent years […]
Read More »September is National Pain Awareness Month
Sunday, September 1st, 2013
September 4 – 7, 2013: Pain Week The National Conference on Pain for Frontline Practitioners Las Vegas, NV September 13, 2013: For Grace’s 6th Annual Women In Pain ConferenceLos Angeles, CA Getting Real: Transforming Hidden Truths Into Positive Action September 25 – 26, 2013: 7th Annual Pain and Migraine Therapeutics Summit Boston, MA Drug Discovery, Clinical Development & Commercialization […]
Read More »Press Announcement – Tarlov Cyst Institute AT PINE CREEK MEDICAL CENTER – Dallas, TX – Is Now Open!
Thursday, August 8th, 2013
Dr. Frank Feigenbaum’s proven surgical technique is an integral part of The Tarlov Cyst Institute at Pine Creek which provides pain management, psychological, rehabilitative and nursing services for patients and families. 700+ patients from around the world with symptomatic Tarlov cysts and other meningeal cyst types have been treated to date. Outcomes data from several […]
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