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Dec. 14, 2017

TOPIC: Featured News, Patients & Members

Together, we can be stronger for those that need us.

Posted by Christina Jensen
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare diseases.
So as we enter 2018 we at NORD are planning to support even more advances. We know that in this environment, we face new challenges. But we remain committed to the cause that keeps us going: the needs of patients with rare diseases and the knowledge that we are having a direct impact on their health and well-being, every day.
I ask you to join me in welcoming the new year with a spirit of optimism and with renewed commitment.
Your contribution will help to ensure that NORD will continue to be on the frontline of supporting further medical progress and assuring that the 30 million Americans with rare diseases have access to the health care and the therapies they need.
With your help, we will be able to:
  • Make our voices heard in D.C. and around the country; from flying patients into the nation’s Capital to hosting lobby days in the States.
  • Continue to host Continuing Medical Education (CME) programs dedicated to educating physicians, nurses and other medical professionals about rare diseases to speed up the time to an accurate diagnosis.
  • Help patients and families affected by disasters, such as hurricanes, access medical treatment and care.
  • Help develop registries and natural histories for rare diseases so that new treatments can be developed more quickly.
  • Protect and advance the laws that establish policies affecting patients with rare disease
  • Educate policymakers about the cost of orphan drugs so they can develop policies that will reduce the cost of healthcare while still assuring healthcare services to patients with rare diseases.
30 million Americans rely on NORD to ensure that viable options exist for research and treatments, and to protect our collective hope for cures. Our mission is to improve their lives – your life – and the lives of those you love. We remain dedicated to fulfilling that promise day-in and day-out.
We can’t do it alone. I need your support to ensure that NORD can continue to represent and lead the community, while continuing to fund innovative research and ensuring patients’ access to critical medication and care.
There is much that remains to be done to address the growing needs of the rare disease population. Ninety-five percent of rare diseases are still without a first treatment option.
Today, I am asking you to support NORD by making a donation to support and advance our programs and advocacy. Your donation will directly go towards programs and services that assist patients and families in need.
With your support, we can be stronger for those that need us. Together, we can have a greater impact.
Sincerely,
Peter LSaltonstall

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