NORD

New! Rare Disease Caregiver Respite Program

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The National Organization for Rare Disorders (NORD)‘s financial-assistance Respite Program is designed for caregivers (parent, spouse, family member, or significant other) of a child or adult with a documented diagnosis of a rare disorder. The Respite Program provides financial assistance to enable the caregiver to take a break to attend a conference or other event, or to simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or spent in a single use.


NORD stated that awards are granted on a first-come, first-served basis to eligible individuals. The applicant must be willing to undergo a financial evaluation of need, and fall within the Program’s financial eligibility guidelines. A NORD Patient Services Representative will guide the applicant through the process, including verifying financial eligibility using NORD’s Electronic Income Verification System. The application decision process may take as few as five minutes over the telephone. Applications completed and submitted via e-mail, fax or U.S. mail will be processed within three business days of receipt. There is no fee to apply.

Covered respite care can include:
• Registered Nurse (RN)
• Licensed Practical Nurse (LPN)
• Certified Nursing Assistant (CNA)
• Home Health Aide (HHA)

Initial funding for the Respite Program was donated by Retrophin, a biopharmaceutical company specializing in identifying, developing and delivering life-changing therapies to people living with rare disease. The donation was made in honor of its former CEO Steve Aselage’s retirement from the company. NORD’s Respite Program fund continues to accept additional donations to ensure this program is sustained for years to come. For more information and instructions on how to apply, visit NORD’s information page. Additionally, you can obtain more information about NORD’s Respite Program by telephoning NORD at (203) 616-4328 or sending an e-mail to CaregiverRespite@nullrarediseases.org.

NORD Issues New Rare Disease Day® Rallying Cry: Show Your Stripes™!

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The zebra is the official symbol of rare diseases in the United States, and is noted for its black and white stripes, which are central to its uniqueness. Everyone has his/her own stripes, those characteristics that make each individual distinct. While each of the more than 7,000 rare diseases are unique, there are many commonalities that unite the rare disease community.

The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day® centering on three simple words: Show Your Stripes™, with a call to action for people to literally and figuratively “show their stripes” in support of rare diseases leading up to and on Rare Disease Day®, which will be observed on February 28th in 2019. In the spirit of raising awareness regarding rare disease issues and celebrating Rare Disease Day, this year NORD will promote specific ways that individuals, organizations and groups can show their stripes. NORD will:

• Ask everyone to wear stripes on Rare Disease Day® to show solidarity in rare disease awareness and education, and to share that message.

• Launch a Show Your Stripes™ challenge, in which the general public will be dared to show their stripes for rare diseases as imaginatively as possible. NORD will recruit influencers – individuals, companies and organizations – to initiate the challenge by thinking of creative ways that they will show their stripes (examples we hope to see: individuals dressing up as zebras, striping a car, 400+ employees at a company all wearing stripes, striping a train car, or advertising on trains).

• Collect and share photos, stories and videos of individuals and their colleagues, friends and families all wearing their stripes together on social media using the hashtags #showyourstripes and #rarediseaseday.

• Provide a Show Your Stripes™ social media profile frame, as well as stickers, signage and other materials that can be downloaded and printed.

• Encourage the hosting of events (virtual or live) in local communities to bolster interest and knowledge for the rare disease cause.

NORD Provides Insurance Videos

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Open enrollment for healthcare insurance coverage is November 1 – December 15, 2017. In addition to providing concise information about state healthcare insurance plans, the National Organization for Rare Disorders (NORD) has created a series of videos to help rare disease patients and caregivers in the process of choosing a healthcare insurance plan. There are 4 short videos covering what questions one should ask when going through the process of choosing one’s plan.