ALPHA-1 EUROPE ALLIANCE

Pro Bono for Rare Disease Advocacy

When advocating for those with rare genetic conditions, it often takes more than dedication; it requires the right legal support. The Alpha-1 Europe Alliance, a new nonprofit advocating for patients with Alpha-1 Antitrypsin Deficiency, received essential pro bono legal assistance in forming its structure. This collaboration showcases how expert guidance can empower advocacy groups, allowing them to maximise their impact.

Thanks to Pro Publico’s matchmaking, Alpha-1 Europe found expert partners in Crowell & Moring LLP, whose team provided guidance through complex legal processes. This report covers the case’s progress, outcomes, and reflections from both the provider and beneficiary on this impactful pro bono journey.

Addressing a Rare Disease: The Alpha-1 Europe Alliance 

Alpha-1 Antitrypsin Deficiency (AATD) is a rare genetic condition that affects lung and liver function, often with severe consequences. In response, leaders of national Alpha-1 patient organisations decided to create a Europe-wide platform dedicated to improving the lives of those affected. They aimed to unite patient advocacy efforts, raising awareness, and ensuring better resources for patients across Europe.

With this mission in mind, Alpha-1 Europe Alliance reached out for legal assistance to establish a formal structure and launch their operations effectively in Belgium. Limited resources, however, meant the organisation needed pro bono help to get started.

Pro Bono Legal Assistance from Crowell & Moring

Crowell & Moring stepped up as the pro bono provider, with a team led by Associate Yilmaz Sakine and continued by Associate Camille Degrave, under Partner Frederik Van Remoortel’s supervision. Crowell & Moring’s commitment to providing tailored, patient advocacy-aligned support was integral to the project’s success.

The law firm’s legal assistance covered essential steps:

  • Structure Selection and Formation: the team helped Alpha-1 Europe determine the best nonprofit structure for a European alliance and assisted with the necessary documents to form a Belgian ASBL.
  • Statutes and Legal Documentation: the lawyers developed statutes in both English and French, ensuring legal accuracy and accessibility across jurisdictions.
  • Registration and Compliance: the team guided Alpha-1 through Belgian registration procedures, including the UBO register, finalising the alliance’s official status.

“We had the privilege of assisting a remarkable group dedicated to a noble cause: supporting patients across Europe with a rare disease. Witnessing the positive outcomes of our support amplifies our sense of purpose as legal professionals,” shared Camille Degrave of Crowell & Moring.

Building Capacity Through Pro Bono Legal Support

This collaborative effort enabled Alpha-1 Europe Alliance to formalise its advocacy, raising its visibility and capacity to support affected individuals. Now officially registered, the alliance can broaden its advocacy efforts, pursue funding, and engage stakeholders at a European level, advancing the cause of Alpha-1 Antitrypsin Deficiency awareness.

Dr. Frank Willersinn of Alpha-1 Europe Alliance expressed gratitude for the pro bono support, saying, “The assistance from Crowell & Moring went above and beyond. We could not have had a better experience – their team understood our mission, connected us with essential resources, and provided expertise with unmatched dedication.”

The Power of Pro Bono Partnerships for Social Good

Pro Publico’s matchmaking service, bringing together Crowell & Moring and Alpha-1 Europe, played a crucial role in setting up the project. This connection allowed Alpha-1 Europe to access the legal expertise necessary to launch their platform and gain legal footing as a European nonprofit. According to Dr. Willersinn, “The matchmaking timeline was efficient, and Pro Publico’s facilitation made everything seamless. We’ll certainly return for future services and hope more associations benefit from Pro Publico’s valuable connections.”

Pro bono legal assistance can be transformative for mission-driven nonprofits. To learn more about how Pro Publico connects advocacy groups with professional assistance, subscribe to our newsletter or reach out to see how we can support your organization’s journey.

Thanks to @Yilmaz Sakine @Camille Degrave @Frederik Van Remoortel @Wietse Vanpouke @CrowellMoring @Frank Willersinn @Alpha1Europe @ProPublico

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