Welcome!


Thank you for visiting our website!  Our hope is to help increase awareness and availability of information to those diagnosed with rare diseases and disorders, and develop a network of support and resources to help those living under these special circumstances.  While there are approximately 6,000 recognized rare disorders recognized by the National Institutes of Health, we hope to gradually build the information and resources we have available on this website to help everyone whose lives have been impacted by any of these disorders, including family members caregivers, friends, and anyone else who is interested, and particularly the resources and support that is available to people in Arizona.  To this end, this website contains information on various health conditions and resources specifically geared for these disorders, as well as links, current research, and anything else that may be of some aid to someone.  We also encourage those that have information or other contribution to e-mail or contact us!  Thank you so much again, and we hope that you are able to find this website useful!


Alone we are Rare. Together we are Strong.

   Join NORD in creating awareness for Rare Disease Day. Learn all the ways you can support the 30 million Americans affected by rare diseases.

Central Arizona Rare Disease Support is proud to partner with NORD and the Rare Disease Day Team to bring awareness to Rare Disease Day on February 29, 2012.  “This is a global observance,” said Peter L. Saltonstall, president and CEO of NORD.  “Individuals and organizations around the world will all be sharing stories of how rare diseases affect their lives.”

 The challenges of living with a rare disease, he said, include:

 ·        Difficulty getting a timely, accurate diagnosis

·        Too little research

·        Too few treatments

·        Reimbursement or other issues affecting access to treatments

·        A sense of isolation

·        Difficulty finding medical experts

 In the U.S., any disease affecting fewer than 200,000 Americans is considered rare.  According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.  Studies have shown that it often takes five years or longer to get an accurate diagnosis of a rare disease.  In addition, only about 200 of the diseases classified as rare have approved treatments.

 Rare Disease Day started in Europe in 2008.  It was launched by EURORDIS (Rare Diseases Europe).  Last year, it was observed in more than 60 countries, with a national sponsor in each country.  NORD is the sponsor in the U.S.

 More than 500 patient organizations, government entities, research institutions, and companies developing treatments have signed up as Rare Disease Day Partners on the national website hosted by NORD (www.rarediseaseday.us).  CARDS is proud to be one of those partners, and hopes to actively help build awareness and support both in Arizona and elsewhere for those with rare and undiagnosed conditions. 

Each year, a global planning team selects a theme for Rare Disease Day.  The theme for 2012 is “Rare but strong together.”  

 Rare Disease Day activities in the U.S. will include a “Handprints Across America” campaign to create a gallery of photos on the Rare Disease Day website; educational materials for classroom teachers; and a nationwide blitz of patient photos, stories and videos to increase awareness of specific rare diseases and the challenges of living with a rare disease.

 Several special events are planned, including a scientific symposium at the National Institutes of Health (NIH) and a Rare Disease Patient Advocacy Day at the Food and Drug Administration (FDA).

 “Since many of these diseases are genetic, more than half of the people who have rare diseases are children” Saltonstall said.  “The problems encountered by families are enormous.  It’s important for these families to know they are not alone.”

 NORD was established in 1983.  It provides advocacy, education, research and patient services on behalf of rare disease patients, families, and patient organizations.








**Medical Disclaimer

Central Arizona Rare Disease Support (CARDS) does not engage in the practice of medicine. It is not a medical authority or claim to have medical
knowledge. In all cases, CARDS recommends that you consult your own physician regarding any course of treatment or medication. Information included on this page is not intended to be a substitute for the medical expertise of a fully trained and licensed medical professional. Questions and answers herein should be considered opinion, which may be flawed, as with any information derived from internet sources. All information in the form of postings are derived from open source internet information. Keep in mind that many postings are the opinions of those writing the postings, and do not necessarily reflect the opinion or values of the CARDS page and group administrators. We strongly recommend that you contact your physician with any symptoms that you or individual may have, rather than relying on the information posted. Please Seek medical attention immediately if you or another individual displays symptoms of a medical emergency. Dial 911 to save lives. Thank you.





Comments