The Month of February

During the month of February,  much of the American population will be celebrating historical events, special interest groups and campaigns.  Some of these include Black History,  American History, Children’s Dental Health, and American Heart Month.  Internationally recognized events in February include National Embroidery month (my favorite), Wild Bird Feeding, Cherry and Friendship month.

To much of the Rare Disease Community, February has become a month to celebrate successes in research, tributes to organizations fighting for their cause, and remembrance of those who have lived with rare disease.

With the promotion of rare disease from organizations such as Global Genes, NORD, R.A.R.E. Project, EveryLife Foundation and Rare Disease Legislative Advocates, the rare disease community also has a chance to make a difference in research, managed care, and legislative processes.

Unity Makes Change – the ULTRA Act

As we continue to unify our “voices” and bridge the gap between the rare disease community, members of Congress and those who are unfamiliar with rare disease – our solidarity has managed to strengthen the rare disease community and raise awareness of the unique needs of individuals with rare disease.

Together the EveryLife Foundation, Rare Disease Legislative Advocates, Global Genes and R.A.R.E. Project, and others are working to bring the “many voices” of the rare disease community to Capitol Hill for Rare Disease Day.

With the ULTRA Act of 2012, H.R. 3737 – our goals to unite the rare disease community will not only help spur the development of treatments for very rare diseases but will promote excellent science and improve the FDA’s regulatory process for all patients with life threatening diseases.

To date, 107 patient organizations have already supported ULTRA & more than 1000 people have sent emails to their Congress Members.

We urge all organizations to come together as a solid unit and continue the charge of what February 29 means to so many with Rare Disease.  As ONE, we can make a difference.

For more information about Lobby Day on February 28:

https://bit.ly/RDLALobby

Julia Jenkins, RDLA

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