When diagnosed with a rare and serious disorder, finding support is hard financially and mentally. NORD, the National Organization for Rare Disorders, is here to help those in need. NORD believes in being “committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”
NORD has been around for over 30 years constantly fighting and looking for answers and giving support to those who have been faced with a rare disorder. NORD supplies so much more than grants to those in need. They strive for patient advocacy, mentorship for patient organizations, patient and professional education, research support, a patient assistance program and international partnership. “It’s nice to know you have people who care as much as you do.” Alyssa Dodge, member of NORD, says.
Recently, NORD has came up with a Rare Caregiver Respite Program designed to enable caregivers to take a much-deserved respite because NORD wants to make sure that all people involved in this battle are acknowledged. Through the program, NORD provides financial assistance to eligible caregivers covering up to $500 annually so that a respite caregiver may be secured to care for a loved one. Potential applicants can reach out to NORD to determine if they meet eligibility requirements to receive the grant. Beth Pruitt, a recent recipient, says, “Receiving this respite meant I could concentrate more on what are we going to do today, rather than how am I going to get enough sleep.”
Patient Nicole was diagnosed with stage 3 sarcoma cancer when she was only 27. She stated that NORD made her feel known and loved, and she is very appreciative that she had the opportunity to share her story and spread awareness about her situation through NORD and the platform it gives her.
NORD hosts many events to raise money such as marathons, and fundraisers at local events and are always accepting donations through their website. Recently NORD has teamed up with Cheerful, an app that allows donors to virtually round up their spare change from everyday bank card transactions and donate to research to make donating easy and convenient for anyone interested to help.