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RESOURCES for Rare Disease Patients via NORD
What is NORD? And why did you compile their resources?
NORD stands for the "National Organization for Rare Disorders." According to NORD, "The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy." Read more below to learn about NORD (from their "About Us" webpage).
I have personally found NORD to be my go-to resource for Rare Disease education and the connections I was looking for within the Rare Disease World. I have quoted/copied/pasted some helpful info and links directly from NORD into the sections below, to highlight their programs, resources and databases in an effort to help you with your healthcare navigation in the world of Rare Diseases.
NORD Resources for Rare Disease Patients & Caregivers
About NORD
"The National Organization for Rare Disorders (NORD) is the leading independent patient advocacy organization representing all individuals and families affected by rare diseases in the United States. Alongside a growing network of disease-specific member organizations, professional patient advocacy groups, and industry partners, NORD improves lives, empowers patients and caregivers, and provides the right information and resources at the right time.From top to bottom, NORD is a tried-and-true champion and thought leader for the rare community, leading the charge to eliminate the struggle of rare diseases once and for all.
NORD improves care, advances research, and drives policy for the over 25 million Americans living with rare diseases. We support and uplift individuals and families, more than 330 patient advocacy member organizations, numerous researchers and healthcare providers, and more.
NORD began as a collective of patients and caregivers advocating for the Orphan Drug Act in 1983. In the four decades since our founding, NORD has led the way to eliminate the struggle of rare diseases once and for all.
NORD celebrates our past as we strive to advance our present and secure a brighter future. Today, two of our prominent initiatives include our Rare Disease Centers for Excellence, a nationwide network of cutting-edge facilities that provide standards of specialized care and disease management, and the IAMRARE Research Program and platform, which allows patients and organizations to shape medical research by collecting the data needed to define the natural progression of their disease. NORD will continue to grow and impact lasting change, so that we can meet the needs of the national and global rare community for many years to come.
NORD embodies the community we serve. We have made an impact by building, fostering, and connecting individuals, organizations, and stakeholders of the rare disease community. From rare disease patients, to friends and caregivers, to advocates, researchers, and physicians – NORD believes in the power of bringing everyone to the same table.
Collaboration will help us achieve the ultimate goal – identifying, treating, and curing rare diseases.
ADVOCACY ORGANIZATIONS: NORD’s integrity, trust, and elevation of the unbiased patient voice starts and ends with our over 330 member organizations, a group of incredible nonprofit and patient advocacy organizations around the country.
CORPORATE COUNCIL: Anyone affected by a rare disease can count on our 40-year history, vast industry connections, and the true strength that comes from having an organizational powerhouse in their corner. In 2021, NORD welcomed 25 new Corporate Council members, bringing our network of companies engaging with experts in the rare community to 128.
BOARD OF DIRECTORS: NORD’s Board is a key decision-making governance body and includes representatives of NORD member organizations as well as individuals who have demonstrated relentless and visionary leadership in serving the rare disease patient community.
RARE ACTION NETWORK: By harnessing the power of action, storytelling, training and resources, NORD has made the rare voice essential at the local, state, and national level. NORD’s Rare Action Network® features more than 18,000 engaged volunteers and advocates across the country, mobilizing in pursuit of equitable access to timely diagnosis, treatment and care for every person impacted by a rare disease.
Hand-in-hand with our partners, members, advocates, and growing team, NORD has made massive strides in innovation, advocacy, education, and strategic leadership in the rare disease space."
“Alone we are rare. Together we are strong.”
NORD's info above was copied/pasted from their site, available here: https://rarediseases.org/about-us/
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NORD's RARE DISEASE RESOURCES
NORD Rare Diseases Database
- Provides reports on rare diseases
- Written in patient-friendly language
- Links to disease-specific patient organizations and other rare disease resources that provide further support for patients and their families
- To search the database, visit: https://rarediseases.org/rare-diseases/
NORD Resource Center
- Provides rare disease patients & loved ones with free webinars, fact sheets, infographics and other helpful materials
- Includes free educational videos that cover a variety of topics that affect the rare disease community. For a full list of videos, please visit our YouTube channel playlist here
- Invites you to attend free, interactive webinars on a variety of topics like self-advocacy, health insurance, care coordination, specialty pharmacies, and getting involved. Interested in being alerted as to when our next webinar will be? Sign up for alerts here. For a full list of past webinars, please visit our YouTube channel playlist here
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NORD Rare Disease Centers of Excellence - Find a Center
Working Together to Reimagine the Future of Rare Disease Patient Care & Research with World-Class Expertise
Every person who has a rare disease deserves the best possible care and support. NORD Rare Disease Centers of Excellence are working together to make this vision a reality.
Each Center offers world-class doctors in all major specialties and brings together medical teams experienced in diagnosing and treating a wide array of rare diseases. In addition, researchers at each Center are working with doctors and patients to find more treatments and cures for rare diseases. NORD is interconnecting this network of Centers to encourage collaboration and sharing of best practices and expertise.
Together, NORD Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients and are at the cutting edge of some of the biggest medical and scientific breakthroughs.
To search the NORD Database for RD Centers of Excellence, or other rare disease resources visit: https://rarediseases.org/rare-disease-centers-of-excellence/
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How to find a Patient Organization for your Rare Disease
Find a Rare Disease Patient Organization - Database
NORD's database offers patients and families a listing of organizations and resources that can provide them with free information, support, and services. These organizations can be very important in helping navigate living with a rare disease. ODB Disclaimer: Please note that NORD provides this information for the benefit of the rare disease community. By providing this information, NORD is not endorsing or recommending any organization’s programs or services.
To search NORD's Database for a Rare Disease Patient Org, visit:
https://rarediseases.org/patient-organizations/
***DISCLAIMER: While NORD and EveryBody Empowered cannot endorse or recommend any of the organizations found through the database, the database through NORD is a reliable resource and great for connecting Rare Disease patients and organizations. I find that aside from NIH and NORD, individual rare disease organizations may have the most up-to-date info on research about the disease, diagnostics, treatments and clinical trials, as well as disease-specific programs and resources.
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RARE DISEASE PATIENT PROGRAMS
NORD's MedicAlert® Assistance Program for Rare Disease Patients
What is the purpose of this program?
NORD’s MedicAlert Assistance Program provides MedicAlert products and services to eligible individuals in the rare disease community. If someone with a rare disease can’t speak for themselves in an emergency, MedicAlert can be their voice in providing important and potentially life-saving information. The program provides eligible individuals with a MedicAlert product and 3-years of membership.
Who is eligible to apply?
This program is designed for those with a rare diagnosis who:
- Are a United States citizen or US resident of six (6) months or greater with evidence of residency such as a utility bill showing the patient’s name and address
- Fall within the program’s financial guidelines and adhere to application requirements that are set in advance by NORD
For more information, please visit: https://rarediseases.org/patient-assistance-programs/medicalert-assistance-program/
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How to Find a Rare Disease Patient Assistance Program
RareCare® NORD’s Patient Assistance Programs
Since 1987, NORD has provided assistance programs to help rare disease 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.
Please search NORD's database for rare disease resources here: https://rarediseases.org/patient-assistance-programs/financial-assistance/
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NORD Rare Disease Educational Support Program
What is the purpose of this program?
The Rare Disease Education Support Program is designed to offer rare disease patients and/or their families/caregivers an opportunity to participate in educational programs and conferences that offer rare disease content. NORD’s program provides financial support for registration costs (and once conferences are no longer solely virtual, the program will also provide limited assistance with associated travel and lodging costs for conference participation). Interested applicants may apply for financial assistance to advance their knowledge, participate in collaborative opportunities, network with peers, medical professionals, researchers, advocacy groups and subject matter leaders.
As the saying goes, knowledge is power. It is vital that people directly impacted by the more than 7,000 rare diseases are armed with the knowledge and information they need to live their best lives while managing their rare condition. One of the pillars of NORD’s mission is educating patients and caregivers to advocate for themselves so they can gain access to accurate diagnoses, clinical research, quality care and treatments.
Who is eligible to apply?
This program is designed for those diagnosed with a rare disease and immediate family/caregivers.
- The applicant or applicant’s family member must be diagnosed with, or under consideration for diagnosis of a recognized rare disease.
- The applicant(s) must be a US citizen or permanent resident of the United States for at least 6 months.
Assistance is based on eligibility criteria and funding availability
What is the application process for this program?
The rare disease diagnosed and or his/her family or caregiver may contact NORD by phone, or email to apply.
The RareCare® Patient Services Representative will guide the applicant through the application process, determine eligibility and award assistance.
Awards are granted on a first come, first served basis.
What kinds of assistance are offered in this program?
- Reimbursement for the registration costs of rare disease conferences and educational programs (conferences that provide patient or family scholarships are excluded).
- Classes that are online, virtual or in-person may be eligible.
- Examples of rare disease educational programs include:
- General rare disease educational programs or conferences
- Disease-state specific programs, or meetings
- Workshops that support a specific care aspect for rare disease such as nutrition
- Rare disease advocacy meetings
- Rare disease support group meetings or workshops
- Limited financial assistance with the cost of travel to a rare disease educational conference or program.
- Limited assistance with the cost of lodging should overnight stay be required in order to attend or participate in a rare disease educational program.
How do I get more information and apply?
Contact NORD’s Rare Disease Educational Support Programs
Monday-Thursday 8:30am – 7:00pm ET
Friday 8:30am – 6:00pm ET
860.556.2208
203.635.7486
Email: rdeducate@rarediseases.org
US MAIL to:
NORD
Attention: RD Educate Program
55 Kenosia Avenue
Danbury, CT 06810
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NORD's Caregiver Aid / Respite Program
Help getting Caregiver Aid
Caring for a loved one [with rare diseases] demands significant amounts of time, attention, patience and dedication. Our Respite Program provides financial assistance to enable caregivers [of rare disease patients] a break to attend a conference, event or simply have an afternoon or evening away from caregiving.
How to apply
Awards are granted on a first come, first served basis to eligible individuals. There is no fee to apply.
Contact a Patient Services Representative at 203.616.4328 or email CaregiverRespite@rarediseases.org.
Who is eligible?
The caregiver must:
- Be a US citizen or permanent resident of the United States for at least six months with evidence of residency.
- Undergo a financial evaluation of need to determine if they fall within the program’s financial eligibility guidelines.
- Provide care for an individual with a confirmed rare disease diagnosis.
What care may be covered?
- Registered Nurse (RN)
- Licensed Practical Nurse (LPN)
- Certified Nursing Assistant (CNA)
- Home Health Aide (HHA)
- Non-professional caregiver
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NORD's Resources for CLINICAL TRIALS
More Than 90% of Rare Diseases Have No Treatment. Clinical Trials Are Essential for Identifying Therapeutic Options
Participating in a clinical trial can help you [rare disease patients] access investigational therapies intended to provide new or better ways to treat medical conditions. If you are interested in participating in a clinical trial as a treatment option, speak with your provider who may be able to make a recommendation.
See supporting rare disease resources in NORD's library.
NORD's Resource Library offers tips and other information, including:
- What to know about participating in clinical research
- Questions to ask your provider
- Navigating insurance coverage for clinical trials
- Financial assistance for clinical trials
Where can I find information about current rare disease research?
We share information about opportunities to participate incurrent clinical trials and other studies and in our Rare Disease Database. Below is a list of other resources.
- Clinicaltrials.gov is a US government website that lists all studies receiving US government funding, and some supported by private industry
- Centerwatch.com shares information about clinical trials sponsored by private sources
- Clinicaltrialsregister.eu/ provides information about clinical trials conducted in Europe
- ResearchMatch is a nonprofit program funded by the National Institutes of Health (NIH). It helps to connect people interested in research studies with researchers from top medical centers across the US
To search the NORD database for clinical trials:
https://rarediseases.org/living-with-a-rare-disease/find-clinical-trials/
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NORD's Patient Registry Program
IAMRARE® Registry Program
Rare diseases present unique challenges for researchers and companies working towards treatments and cures:
- Small patient populations;
- Hard to diagnose or delayed diagnosis due to lack of education and understanding among medical professionals;
- Poor understanding of the natural history of the disease and its progression without intervention;
- No prior pathways to follow; clinical endpoints that are often unclear; and
- Enrollment and retention challenges.
To address the special needs of those developing treatments for rare diseases, NORD has created a natural histories patient registry platform as part of the IAMRARE Registry Program with extensive input from FDA, NIH, patients, organizations and experts in the field.
NORD’s platform is an easy to use system that allows [rare disease patients] and organizations to inform and shape medical research and transnational science for rare diseases by launching high-quality, customized registries to collect the data needed to define the natural progression of their disease – ultimately advancing product development. For more info and rare disease resources:
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