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Apr. 15, 2016

TOPIC: Featured News, Get Involved

A Special Thank You to Volunteers in the Rare Disease Community

Posted by Kristen Angell

thank you!Volunteer by definition is a person who voluntarily undertakes or expresses a willingness to undertake a service. The role of a Membership Manager at NORD is a very unique and rewarding one. In this role, I have the opportunity to work with NORD’s member organizations who are all 501(c)(3) non-profit organizations in the rare disease space. What some of you may not know is that a majority of these organizations are 100% volunteer run. Organizations that are not all currently volunteer run were at one point, run by volunteers. Through their organizations they offer a vast number of services and information for patients and their families. This week is National Volunteer Week and I would like nothing more than to recognize these individuals for the tireless work they do and to thank them for making a difference.

Thank you to the parents of a child living with a rare disease that found time and committed themselves to creating a patient organization that is dedicated to helping other families navigate through their child’s rare diagnosis. You have connected them with the tools and resources they need. You have raised funds for research and offered support to other families so they don’t feel alone and isolated as you once did. Your devotion to your child and the rare disease community that you serve is both encouraging and impactful.

To the parent who lost their beloved child to a rare disease but still manages to find the strength to carry on their child’s legacy by running an organization in their memory, thank you. You are dedicated to seeking cures in hopes that one day other parents won’t have to endure the devastating loss of their child. You have inspired us all with your compassion and devotion all while grieving for your child.

Thank you to the patients that run an organization between treatments and dealing with the daily struggles of living with a rare disease. You have taken the limited energy you have to be a voice not only for yourself but for others that struggle like you have. Your crusade to find a better quality of life for you and others like you is admirable and deserves a tremendous amount of appreciation.

Thank you to the families and friends of these dedicated volunteers. The efforts you have made for the rare disease community should not go unrecognized. You are the first to be asked to give up your time or make donations, to join a fundraising initiative and help raise awareness. You’re there for event set-up/clean-up and pitching in where needed with absolutely no hesitation. There have been missed dinners, soccer games, school functions, family outings and parties that you have endured on your own because your loved one had been executing a major fundraising event, board meeting, attending advocacy events or meeting with potential donors. Your support and sacrifices are truly commendable.

It is truly an honor to be able work with these people every day in my role at NORD, and to be able to take this opportunity to recognize them for their efforts in the rare disease community. The impact these organizations have made would not be possible without the compassion, commitment and persistence of these individuals.  Thank you volunteers, you are all truly inspiring!

2 Responses to “A Special Thank You to Volunteers in the Rare Disease Community”

  1. Gina Szajnuk says:

    Kristen,
    Words cannot express my gratitude for your guidance and your friendship. You are an incredible mentor and I appreciate your continued support. Thank you for all that you do for my family and the entire Rare and Undiagnosed community.
    Much love,
    Gina

  2. Andre Taylor says:

    Kristen,

    Thank you for such kind and beautiful words! With leaders like you it is easy for patient groups, families, and volunteers to fall into place. You encourage us when we are at our lowest, help us when we don’t know the answer, and are always a true light and help to every situation! We are thankful for you too!

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