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Summit Agenda Interest Form

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Patient Advocacy

NORD’s policy team works with policy makers on Capitol Hill, in the White House and in government agencies to help inform policies that are reflective of the needs of rare disease patients. Since 1983, NORD has ensured that the rare disease perspective is at the table when important decisions are made. You can join NORD in advocacy on national issues and, through our Rare Action Network, on state-level issues.

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Mentorship for Patient Organizations

Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. We provide capacity building and mentorship services through webinars, in-person meetings, and toolkits to help establish, strengthen and grow organizations.

NORD Overview

Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments. NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.

Learn more >

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NORD Overview

Every day in America, 30 million people wake up to fight the battle with a rare disease. The vast majority are children. For most, there are no cures and few, if any, proven and effective treatments. NORD provides a unified voice for those courageous individuals, and the parents and other caregivers seeking to help them, so that they won’t have to fight that battle alone.

Learn more >

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Criteria for Organization Membership

NORD’s organizational membership community provides a united force for advocacy, research and medical advancements, policy successes, public awareness and support for the 30 million Americans living with rare diseases. Our organizations represent a broad range of disease-specific communities and provide leadership to advance the goals we all share.

Patient Assistance Programs

Since 1987, NORD has administered patient assistance programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Patient Assistance Programs

Other Resources

If NORD does not have a program for your disease, you may find one from one of these other patient assistance providers.
More resources >

Are you eligible?

Eligibility criteria can vary by program but most of NORD’s patient assistance programs require the following:

  • Does the patient have an applicable diagnosis or physician referral?
  • Is the patient a legal US resident?
  • Does the patient meet NORD’s financial need criteria?

How it works

Maximum award levels vary by program. Awards are made for a calendar year, and patients may reapply for subsequent years. NORD will respond to your application within two business days.

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Patient Advocacy

NORD’s policy team works with policy makers on Capitol Hill, in the White House and in government agencies to help inform policies that are reflective of the needs of rare disease patients. Since 1983, NORD has ensured that the rare disease perspective is at the table when important decisions are made. You can join NORD in advocacy on national issues and, through our Rare Action Network, on state-level issues.

icon

Mentorship for Patient Organizations

Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. We provide capacity building and mentorship services through webinars, in-person meetings, and toolkits to help establish, strengthen and grow organizations.

Membership Benefits

Membership on the Council reflects a commitment to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service.

The Council also provides unique opportunities for companies to engage with the rare disease community, not only with the patient advocacy organizations that constitute NORD’s members, but also with top scientific, clinical, and policy experts and leaders in the worldwide rare disease community.

The NORD Corporate Council has three special areas of focus:
– Policy and Regulation
– Patient Access and Reimbursement
– Research and Intelligence

Learn more about the benefits of Corporate Council membership>

 

Membership Requirements

  • Proof of tax-exempt status pursuant to Section 501(c)(3) of the Internal Revenue Code, proof of filing for 501(c)(3) tax exempt non-profit status or documentation of status for international organizations.
  • A copy of your organization’s dated by-laws, showing that your mission and programs compatible with NORD’s goals of being patient-centered, and advocating on behalf of patients in the rare disease community.
  • Names and addresses for your Board Members (NORD requests that members have at least 5 members of the board that meet at least twice annually; either in-person of by conference call). A committee structure for the board is recommended.

Categories of Membership

  1. National Membership is for U.S. based tax exempt 501(c)(3) organizations.
  2. International Membership is for globally recognized tax exempt organizations.
  3. Associate Membership is for U.S. based organizations that have applied for 501(c)(3) non-profit status; or (2) are local rather than national service agencies, or chapters of national organizations.  Associate Members enjoy all of the privileges of national members, except for voting in NORD’s Board elections.
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Medication Specific Assistance Programs

NORD’s Medication Assistance Programs are designed to help patients who are without insurance or are underinsured obtain access to these medications. The following is a list of NORD’s current Medication Assistance Programs.

BUPHENYL® Medication Assistance (sodium phenylbuterate)

Conditions:Urea cycle disorders

Company:Horizon Pharma

Contact:Reimbursement Hotline at 1-800-711-0811

Email:buphenyl@rarediseases.org

Fax:1-203-349-3277

CYSTADANE® Medication Assistance (betaine anhydrous for oral solution)

Conditions:Homocystinuria

Company:Rare Disease Therapeutics, Inc.

Contact:1-844-766-6538

Email:cystadane@rarediseases.org

Fax:1-203-349-3280

ITB® Therapy Assistance Lioresal® Intrathecal (baclofen injection)

Note:Closed to new applicants

Conditions:Severe spasticity

Company:Medtronic, Inc.

Contact:(800) 999-6673

Email:ITB@rarediseases.org

Fax:1-203-349-3281

Lixelle β2M Apheresis Column

Conditions:Dialysis-Related Amyloidosis (DRA)

Company:Kaneka Pharma America LLC

Contact:844-810-1891

Email:Lixelle@rarediseases.org

Fax:1- 203-267-0386

Therakos Photopheresis Therapy

Conditions:Cutaneuos T-Cell lymphoma (CTCL)

Company:Therakos, Inc

Contact:1-877-241-7220

Email:therakos@rarediseases.org

Fax:1-203-428-4472

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How to Get Started

To apply for assistance, find a program that meets your needs and use the related contact information.

Advancing Basic and Translational Research

NORD is committed to fostering a healthy and robust rare disease research environment. With close to 7,000 rare diseases without a treatment, the initial research that can later lead to a treatment or cure is especially important to the rare disease community. Click on the titles below to learn more about NORD’s advocacy initiatives to maintain a strong environment for rare disease research.

The U.S. needs more physicians and researchers educated in rare diseases. An increase in medical and scientific professionals with rare disease experience will lead to faster diagnoses, more efficient and effective care, faster discovery of cures, and overall benefits to the health system, as rare disease research will be more easily translated to more common diseases.

The U.S. needs more physicians and researchers educated in rare diseases.
An increase in medical and scientific professionals with rare disease experience will lead to faster diagnoses, more efficient and effective care, faster discovery of cures, and overall benefits to the health system, as rare disease research will be more easily translated to more common diseases.

The U.S. needs more physicians and researchers educated in rare diseases. An increase in medical and scientific professionals with rare disease experience will lead to faster diagnoses, more efficient and effective care, faster discovery of cures, and overall benefits to the health system, as rare disease research will be more easily translated to more common diseases.

The U.S. needs more physicians and researchers educated in rare diseases. An increase in medical and scientific professionals with rare disease experience will lead to faster diagnoses, more efficient and effective care, faster discovery of cures, and overall benefits to the health system, as rare disease research will be more easily translated to more common diseases.
The federal government has various programs to provide incentives for medical professionals in training to enter certain specialties. NORD proposes that similar training and research incentives be established to encourage the study and research of rare diseases. Options Congress could pursue include subsidized NIH training programs to encourage research into rare diseases and reform of the Graduate Medical Education (GME) system to provide incentives for medical residency programs on rare diseases.

Strengthening the Drug Development Process

Starting with the Orphan Drug Act in 1983, NORD’s mission has always included ensuring that the laws, regulations, and incentives surrounding the drug development process encourage orphan therapy development. For over 30 years, NORD has worked to strengthen the orphan drug development process Click on the titles below to find out how we work with patients, patient organizations, Congress, the FDA, and the biopharmaceutical industry to strengthen the orphan drug development landscape.

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